Reading about people’s efforts to stay safe during the coronavirus pandemic, it occurred to me that I’m especially good at two things: (1) carrying on through an illness full of scary unknowns, and (2) living in isolation. And that I learned something along the way about how to come out the other side.
In August 2018, I was diagnosed with multiple sclerosis, the disease that attacks the nervous system. In a span of months, I went from running sprints to hardly being able to stand or hold a conversation. My case was so aggressive that I decided to consider getting a bone-marrow transplant to scrub my immune system of faulty cells and potentially put my disease into full remission. Doing so would mean traveling to a hospital in Russia, because the treatment is largely unavailable to MS patients in the United States. I desperately wanted the transplant, but there was a small but serious risk that it would kill me. I am a single mother of two boys, then 5 and 8, and the breadwinner in my family. We had been struggling financially even prior to my diagnosis. How could I possibly weather being out of work for months? If something happened to me, who would care for my children?
I chose to take my chances and arrived in Moscow in late 2018. In a private hospital, chemo medications held in bags the size of body pillows—more than twice what the average cancer patient receives—were pumped into my body. The goal was to bring my white-blood-cell count to zero, after which I’d spend 12 days in isolation, and then several months in self-quarantine while my body built a new immune system—one that hopefully would be free of disease. From my bed, I watched my leukocyte count, my platelet and hemoglobin levels, drop and drop again, to almost nothing. Then the isolation door closed with a soft click.
For 12 days, I never left the room. I washed out my mouth with a cold, red liquid that tasted like formaldehyde. I scrubbed my body with antiseptic solution. I heated up already-hot food in a microwave in my room, and then heated it again out of fear. My only interactions were with medical professionals layered in blue protective covering, everyone masked and gloved. The white door of the room: always closed. My tongue turned a persistent, greenish color due to the chemo toxins. Exercise consisted of the 10-foot walk from my bed to the bathroom, which exhausted me.
Alone in my room, I ran my hand over my hairless scalp, and carefully fingered the tubes protruding from my neck. I longed for my children, for the way my 8-year-old, Joey, would pop out from around a corner and shoot his bubble gun at his little brother’s head, or how 5-year-old Ethan never stopped bouncing, even when I hugged him. I was incredibly grateful to get the treatment, but an undercurrent of rage ran through me. Autoimmune disease had already taken so much, and chemo and isolation were stealing what was left. My remaining energy, my hair, my money, my ability to teach English, the touch of my children, as well as any sense of safety I’d had. If any germ, any microscopic infectious agent, snuck into my body, I could go into sepsis, and that would be the end. I scrubbed the crevices of my toes, the hard-to-reach places of my back. Even my suitcase and toothbrush had been confiscated as possible vectors of disease.
“Be careful,” the medical staff said every time they left the room.
Don’t fall. Don’t touch. Don’t breathe.
I passed minutes by picking at the paint on the wall, before the fear shot through me that this, like everything else, was risky. I stroked the drawing of a blue airplane that Ethan had made for me and used a (wiped-down) pen to draw the boys’ rounded cheeks, sketching in Ethan’s eyelashes, so long that they touched his kid-size sunglasses when he blinked.
The nights in isolation were a silence so complete, a rush of nothingness I’d never experienced before. I whistled to myself and hummed. I needed to make noise to confirm that I was still part of this world.
On day six of isolation, my leukocyte count was 0.03 (the normal number is between 4,000 and 11,000 per microliter of blood), and I had 24 platelets (instead of the 150,000 to 450,000 that are typical). My eyelashes had fallen out, and my brows were patchy. I lay on my hospital bed as tears squeezed out of my eyes and traveled down my utterly smooth scalp. It was 2 a.m. when my doctor’s masked face appeared above mine: Denis Fedorenko was the hematologist guiding my treatment. He flipped through my chart, checking readouts.
“Do you ever get tired?” I asked. The lights of the parking lot below my window illuminated the snow-capped fir trees of a garden. A distant figure walked down the street, scarf wrapped tightly around his head, shoulders hunched against the cold.
When I looked away from the window, Dr. Fedorenko was watching me. I’d come to Moscow expecting to be afraid of him and the other physicians and nurses. Dr. Fedorenko had tinted Coke-bottle glasses that reminded me of Elton John’s. He was rail-thin and far younger than I thought he’d be, and his bangs spiked comically out of his head in the style of a man who worked much more than he looked in a mirror.
“I do get tired,” he replied in a thick Russian accent, before continuing my next set of injections. At the door, he paused. “We do what we have to, and what we can,” he said, smiling. He came back and gave me a very gentle fist bump before leaving the room.
After I emerged from the 12-day isolation, my face was swollen from steroids and my lips were white like a clown’s, but the symptoms of my MS had nearly disappeared: no more strange buzzing in my hands and feet, no leaden limbs, no excruciating shocks down my spine. Still, surviving isolation was only the first step.
During the months when my immune system gradually reconstituted itself, any infection continued to be potentially lethal. Germs became my archnemeses, but the details of fending them off seemed overwhelming. I needed to boil my food; avoid fresh fruit and vegetables; wash down the kitchen table once, twice. How clean was my silverware? Yes, I’d washed my hands, but what about the dryer handle I’d just touched? I took certain calculated risks. The greatest of them involved my children—rowdy boys who only weeks before I’d left home had endeavored (somewhat) to stop sneezing in my face. Upon my return, when I walked gingerly into our apartment, the boys jumped up from the couch and bounded toward me. I opened my arms to them, quaking with fear.
The kids climbed on me like I was their personal playground, so the rule was that they had to strip their clothes at the door after school and immediately place them in the washer. I wiped down every surface with medical-grade sanitizer, washed my hands upwards of 50 times a day, and tried to remember to grab the underside of the door handle to avoid the accumulation of bacteria on top. Oh, the things I learned to do with my feet: open dumpsters, pick up toys, close doors, and even (gasp!) clean my kids’ dirty faces. Sometimes every detail seemed crucial. Other times, it was really hard to care.
I wish I could say I never lost it with my children. “Ethan, you can’t cough on me! It’s dangerous!” I barked one day. My son stared at me wide-eyed and blinking. I started to cry because I wanted to hug him, but I was afraid to.
As my immune system grew stronger, I tentatively returned to the college campus where I worked. After warily eyeing the doorknob, I stepped into the classroom. Students smiled at me. I returned their smiles as best I could. You’re going to kill me, I thought.
I’d asked anyone who felt sick to stay home, or to email me the day before to let me know. But during one class, weeks after I’d started to feel more at ease, a student collapsed in a fit of coughing over her desk. I grabbed my belongings with trembling hands and ran into the hallway. I could hardly see as I tripped up the stairs, passing students in backpacks and couples flirting against the wall, and threw my body at the exit doors, out into the Texas sunshine. In front of the gurgling fountain that is the centerpiece of Texas State University’s campus, I had my first panic attack.
The mind quiets over time. Eventually, I’d realize that I’d plopped down in a chair without thinking about who had last touched it, or that I’d laughed without calculating the distance from my mouth to the next person’s. My worries returned to what they had been before the disease drove out other thoughts: How were the boys doing in school? Did I pay the light bill? What was I going to make for dinner? When news of the coronavirus broke, I’d already learned to accept—and even love—a life with Clorox wipes in the glove compartment, hand sanitizer in every pocket, and constant vigilance against disease.
Once again, so many of life’s joys are out of reach, for how long we’re not sure. A restaurant meal. Co-workers packed around the same computer, emphatically debating the work on the screen. The embrace of a friend. I feel the familiarity of interrogating my children: “Have you washed your hands? With soap? How much soap?”
In the weeks after my treatment in Moscow, the boys tried valiantly to protect me, placing all “outdoor” things such as backpacks and schoolbooks in bins beside the door, running away from coughing friends while yelling over their shoulders, “Mommy can’t get sick. She’s bald!” Our efforts were certainly imperfect. Many times, I forgot myself and kissed my sons’ faces before they’d taken a bath, or one of them coughed without covering his mouth as I read him a book. We worked to improve our habits. We did the best we could, and that has so far proved sufficient.
A few days before I was set to leave for Moscow for my transplant, I learned that an Australian patient had somehow caught an infection while in isolation and had died of sepsis within a day, thousands of miles from home. Afterward I lay on my couch in the darkened living room for hours, unable to gather the will to move.
Every morning for months, I’d left chocolate on my nightstand to eat first thing in the morning, so I’d have enough energy to get out of bed. I had stuffed little feet into little socks with scorching hands, telling myself I had to keep moving. I’d squinted through brain fog at my son’s homework; I’d grabbed at furniture, the wall, anything to get to the kitchen to make dinner for the kids. Just get to treatment, I’d told myself. Stop MS. Keep going. Now the idea that the transplant might not even work, that I might die next week, was more than I could bear.
Months before, I’d given a key to my ex-husband, who lived nearby, and by chance, he came to look in on me that afternoon. I heard his key in the lock but made no attempt to get up. “I can’t go on,” I whispered when he drew up beside me. “I don’t want to go on.” The boys were playing upstairs; I didn’t want them to hear.
My ex-husband is much older than I am, and he had served in the Israeli army for more than two decades. One difficult operation put him alone in enemy territory for 183 days. Every moment he wasn’t avoiding gunfire, he was lice-covered, hungry, and wondering whether he’d make it out alive.
He knelt down and put his hands on either side of my face. “Sandi, I’m not asking you for forever,” he said. “I’m asking you for 183 days.”
That was the deal we made that day in my living room. I’d keep up the fight for 183 days.
For much of that time, I lived in a haze of pain, of drugs and more drugs, which turned into the onslaught of chemo and the near-total disappearance of human contact. At my weakest, I forced myself to remember running sprints for the Naval Academy test, where I was ultimately admitted along with three other women from my state. I remembered my volleyball uniform, drenched in sweat and sticking to my skin, when my Division I college team soundly beat the national team of Ireland.
The days passed. The chemo ended. My strength returned. With the disease in remission, my body began to repair itself, and I regained full use of my hands and feet. When the full 183 days had passed, I could take long walks, and then run without pain, though I was still fearful of contracting an infection that might kill me.
Today, my youngest son crawls into my lap, and I press my cheek against his. I feel the soft brush of his eyelashes. We are living again in a time of fearful waiting. One hundred and eighty-three days, I think to myself. 182.