Chapter One: My Secret Life
In 1984, when I was thirty-three years old, living in the Twin Cities, and newly separated from my second husband, my gynecologist found protein in my urine during a routine examination. She suggested that I see a nephrologist. My friend Kathleen, who went with me to the appointment, remembers the gynecologist saying that my condition could be serious. I’d already been through a lot in my life—poverty, welfare, teen pregnancy, and two disastrous marriages—so I didn’t let her concern worry me very much. Besides, I hadn’t heard anything about kidney disease running in my family. Don’t get me wrong, there is plenty of illness on both my mother’s and father’s sides. Diabetes? Both my father and his father before him had “sugar,” as many in my community call the disease. In fact, the one time I met my father’s father, he was sitting in a wheelchair with both legs amputated from the ravages of diabetes. High blood pressure? Show me a Black family with no high blood pressure. As a kid, eavesdropping on grown folks’ conversations, I heard my older relatives complain about their “pressure” all the time. Alcoholism and drug addiction? While fortunately, neither of my parents suffered these afflictions, plenty of people on both sides of my extended family did. But kidney disease? At the time I was diagnosed, I’d never heard anyone in the family mention it.
Despite my attitude, I decided to follow my gynecologist’s recommendation and consult a kidney specialist. This young gynecologist had come highly recommended by several female acquaintances, and she’d taken good care of me during my years in the Twin Cities. Besides, I had a good job and good health insurance. Seeing the specialist couldn’t hurt. I was certain that the protein in my urine was a fluke, or an anomaly caused by the stress of my failing marriage.
My friend Jeanie insisted on going with me to the biopsy procedure. I felt perfectly capable of going alone, but Jeanie wouldn’t hear of it. She was one of the few close friends I’d made in Minneapolis and one of the only people I’d told my secret. We’d met at Control Data Corporation, the Minneapolis computer company where we both worked, and immediately bonded over our love of fashion and soul music. We also had something even more significant in common—we were single mothers of sons, which bound us even more closely. Jeanie is White, but she’s as brown in coloring as many of the Black women I know, and just as soulful. She’s also tiny but seasoned by more than her fair share of tough breaks in life. I respected, loved, and trusted her enough to let her see me vulnerable.
The nephrologist wasn’t crazy about Jeanie being in the procedure room but finally gave in to my repeated requests. Jeanie stood beside the operating table wearing a gown and mask, holding my hand, and watching as the doctor guided a needle into my back and pulled out a small piece of my kidney tissue. Pointing to pictures of my kidneys projected onto a screen, the doctor explained that I had a relatively rare disease of the kidney called FSGS, short for Focal Segmental Glomerulosclerosis. For many people like me, he explained, there is no known cause for FSGS. The disease attacks the kidney’s filtering units, called glomeruli, and causes serious scarring, which allows too much protein to be released into the urine. According to this nephrologist, FSGS could lead to permanent kidney damage and even failure. He pointed to highlighted sections of my kidneys and asked, “Can you see the scarring, Ms. Watson? The damage is minimal at this point, but it’s real.”
Honestly, I couldn’t tell which portions of my kidneys were scarred. All I could see were two bean-shaped globs of red flesh on either side of my spine. If my kidneys were diseased, I’d have to take the doctor’s word for it. I was too stunned to see much of anything. I looked over at Jeanie who was squeezing my hand tightly. She shook her head reassuringly as if to tell me that things would be okay. But all I could think was FSGS?What the hell? How can I possibly have a life-threatening disease? I’m only thirty-three years old!
The doctor waited patiently as I stared blankly at the pictures of my insides. Eventually, as we sat in his office, he patted my arm and said sympathetically,
“Ms. Watson, I know this is a lot for you to take in. However, you’ve told me that you’ve been fatigued for some time and your gynecologist sent you to me because of the protein in your urine. Both are symptoms of FSGS. Now we have the biopsy results to support that diagnosis. Ms. Watson, FSGS is a serious disease with no known cure. If your FSGS results in kidney failure, the only options will be dialysis or a kidney transplant. You need to be followed regularly.”
In the doctor’s waiting room, Jeanie put her arms around me and reluctantly said goodbye. She had to get back to work. The receptionist looked at me expectantly as I passed her desk, but I didn’t stop to make a follow-up appointment. I walked out of the office with as much calm and dignity as I could muster. FSGS? I couldn’t even pronounce the full name of this disease. As I drove back to my apartment in St. Paul, the sky opened with a violent rainstorm. I started to cry too. Why not? I was in my own car. No one could see or hear me. Out of habit, I pushed the radio dial. The song “96 Tears” by Mark and the Mysterians was playing, and I sobbed along.
That day was a rare moment for me. I wouldn’t cry like that again for a long time. Although I’d been living in the Twin Cities for almost three years, I was still a South Philly girl, raised to be tough, and self-reliant. I didn’t call my family back in Philly and tell them what was going on with me and I had no intention of telling my 12-year-old son Robert. One of the reasons I’d come to the Twin Cities in the first place was to give my son a more carefree childhood than he could have in Philadelphia. I certainly wasn’t going to tell him that I had a disease that could kill me.