I Traveled to Egypt for a Miracle Cure for My ALS
When I revealed my diagnosis to my mother, she told me to go to Cairo, convinced that I'd be healed there.
The author prays in the Church of the Holy Virgin in Maadi, Cairo.
In 1968, a light in the shape of a woman was seen radiating from the dome of the Church of Saint Mary in Zeitoun, Cairo. She disappeared after two or three minutes, but she reemerged the next week—again for just a few minutes. She continued to visit periodically, and crowds gathered, speculating that the light was the mother of God. The head of the Coptic Church at the time, Pope Kyrillos VI, investigated the sighting and concluded that it was, in fact, a Marian apparition. The (Muslim) president of Egypt, Gamal Abdel Nasser, reportedly built a bigger church across the street as a testament to his own belief that this was Mary. The Egyptian police and government searched for an earthly explanation, but no one could find a projector within miles capable of producing the image. The photos all look different from one another, as though the apparition were too ethereal to be captured in a single image. She continued to visit the church until 1971, almost three years after the original sighting.
In the early 90s I was a religious child, growing up Christian in Egypt, and my mother surprised me when she revealed that people still camped en masse outside Our Lady of Zeitoun during the Virgin Mary Feast, hoping to see Mary reappear. I was only five or six, but spending all night praying and reciting hymns squeezed between hundreds of people in the African summer heat sounded like, well, fun. Besides, what if she returned and we missed it? My family seemed foolishly unprepared, which meant I'd never get her baraka, or blessing.
We never went, and Mary never came back. But other miracles surrounded me. In the West, the word miraculous has penetrated our vernacular in such a way that it's become a synonym for extraordinary, while extraordinary has become a synonym for amazing, and amazing is just what you call the barista who remembers how you like your coffee. All these words should mean something beyond our human capacity, but their place in our lexicon has shifted. None of these words would trigger thoughts of a supernatural force.
In Egypt, they do. There, miracles happen—and often. In Egypt, share a worry occupying your thoughts and people will spout off tales of the works of God. As a child, stories of icons weeping oil or the paralyzed suddenly walking fueled my belief that a divine hand often reached down to rearrange life's affairs. All you need is faith.
I lost my faith when I moved out of my parents' house after college. I didn't lose it in the sense that I was still looking for it—I lost it in the same way I had lost my childhood kitchen set when my family emigrated out of Egypt. I once imagined that a pale pink stovetop could cook eggs, but not anymore. I once believed that faith could move mountains, but not anymore. Still, on a sunny September morning last year, I found myself snuggled in the warmth and comfort of religion, faith, and wonderfully delusional hopefulness.
I needed to tell my parents that my 29-year-old brain was no longer properly communicating with my body—that it would, in no particular order, slowly stop telling my hands to move, then my arms, my legs, my jaw, vocal cords, and tongue. It would eventually forget to tell my lungs to expand, leaving me to slowly suffocate.
My parents were the last people I told, because every part of me believed that I'd tell them and then immediately have to begin planning their funerals. I didn't think my mother, who has a bad heart, has only one working kidney, and is a cancer survivor, could physically add bad news to that list. My sister, Deedee, even suggested I leave out details about the course of the disease.
I flew from New York to Cleveland, where they live, with my backpack and an Arabic translation of the Wikipedia page on ALS. I was ten when we left Egypt, so I never learned which words meant "amyotrophic lateral sclerosis." I had only learned what the acronym signified in English a year prior, when I told a team of doctors that my left hand didn't seem to work quite like it used to.
When I arrived at their home, before I even had the chance to pull up the Wikipedia page or taste a bite from the spread of food my mom had prepared for my arrival, I was gasping for air, and my body was convulsing. I went into a delirious cry, the kind that made my eyes look like a cartoon character's and left the skin on my cheeks leathery.
"The doctors say the paralysis will spread throughout my entire body and I'll die," I managed to pronounce in shattered Arabic. I started to tremble, like my body does now when I'm upset or stressed or cold, rhythmically tossing back and forth in between my mother's arms.
"Don't say that!" she repeated several times. Her eyes were dry.
That entire week I stayed in my old bed from high school, asleep or not, only moving to occasionally use the bathroom. When I experienced a gust of energy, I relocated my laptop and my Netflix marathons to the couch. I'd occasionally answer texts from Deedee, in Washington, DC.
At night my mother slept next to me, underneath the old glow-in-the-dark stars from Spencer Gifts that are still stuck to the ceiling. She always woke up before I did and delivered a breakfast tray with her eyebrows raised, her eyelashes extended to her brow bone, and her jaw slightly dropped with a goofy smile, the same way she'd tell me I was no longer in trouble when I was a kid. While I moped, she went about her day, cooking and cleaning and occasionally calling out to God, Ya Rab. If even a single tear fell across her face that week, I didn't see it. She was tough, a rebel who scoffed at science. Regardless of what the doctors had said, God—she was certain—would have the final word.
"God has never embarrassed me," she said, her words spoken with a confidence that I badly wanted to share. But I wasn't sure that the same God who watches over suffering and injustice in the world would make my rather insignificant heartache a priority.
She told me to go to Egypt, convinced that I'd be healed there. This was my mom—God had never embarrassed her, and I definitely wouldn't, so by the end of the week I promised her that I would go to ask for a miracle. Eight weeks later I was on a flight to Cairo, numbing my anxious thoughts with tiny liquor bottles. For 12 hours I worried that a bishop, priest, or monk would expose that I lacked the one requirement to be miraculously healed—faith. I'd been taught to respect these people, that they weren't just people but servants of the Lord. That stuck with me, even as I shrugged off my religion. Before my trip, I had spoken to family members who seemed baffled and skeptical at how I, a young and otherwise healthy person, had suddenly become terminally ill. They all concluded, rather quickly, that "God tests us when we stray from Him." Even my cousin Evette, a pharmacist, told me, "He gives His toughest battles to His strongest soldiers. So put your faith in Him, before science."
Their judgment made me wonder what my tell was—what outed me as a nonbeliever. I had never told them about losing my faith. Had I spoken about my disease too matter-of-factly? Did I make a joke when I wasn't supposed to? It was apparent, whatever it was, and I doubted that I could mask it while I asked for a new central nervous system.
I traveled to Cairo with a purpose—to fulfill a promise to my mother—but I was also afraid that my skepticism flirted with mockery. I may have been going to be healed, but my instinct was still to approach the matter as a reporter, not a pilgrim. At first I couldn't even bring myself to tell anyone I was sick, and I spent as much time studying the occurrence of miracles in Egypt as I did looking for my own. In Egypt you don't have to look far: On my first day, I called a car to take me to Coptic Cairo, a small enclave of historic churches and religious sites, including one of the areas where the Holy Family is said to have hid while fleeing Herod's death sentence. In the car, my driver, also a Christian, told me with zero instigation, "I witnessed a miracle this morning on my way to pick you up."
I hadn't told him why I was in Egypt, that I was sick, or even that I was a journalist. But it was Sunday and we were visiting ancient churches, so he led his small talk with miracles. He looked back in his rearview mirror and occasionally flailed his right hand, showing off a coke nail in the process, as he detailed to me with both certainty and disbelief how only an hour earlier a priest had performed an exorcism and rid a young boy of demons.
"I don't believe in all that," I confessed. "Maybe the boy is just sick." But no matter how much I argued that people sometimes substitute a supernatural explanation for a scientific one, he wouldn't even consider it.
He dropped me off, and I was left to remember how ancient and beautiful and weird Coptic Cairo is. A stone wall three times my height surrounds the perimeter. Intertwined between the churches, which date back to the third century, are small square graveyards and limestone streets where people have been living since before the Arab conquest of Egypt. Walking up the steps to the Hanging Church, given its name because it's suspended over the Babylon Fortress, I passed couples and chatty teenagers and children with money in hand to purchase candles. Although it's technically the Saint Virgin Mary's Hanging Church, my eyes immediately focused on the icon and remains of Saint Demiana.
My parents say that when my mother was pregnant with my sister, the Virgin Mary came to my father in a dream and told him he would have a daughter. He would name her Demiana, and Demiana would be a nun. A healthy baby girl arrived. They named her Demiana. But she never quite made it to the convent.
Deedee, as I have called her since we were little, is a glammed-up, sexed-up, vivacious version of me who loves strippers and gluten-free diets equally. She's 18 months younger but treats me like the baby sister. In all fairness, she's now the more responsible one. Even though her eyes are wider, her cheekbones higher, and her lips poutier, she's the one who gets mad when someone says we don't look alike. She loves me so much that she broke her personal vow of exile from Egypt for the first time in 14 years and decided to meet me for her Thanksgiving break.
That icon could've been what triggered my tears: Saint Demiana is legendary for her bravery. She was tortured on the orders of a pagan emperor after she refused to renounce her faith. Deedee is brave. She was the first family member I told about my diagnosis. I had tried to protect her, exhausting all possibilities, and I waited six weeks before I finally broke down and called her from outside the ALS Clinic at Columbia University Medical Center. She drove from DC to Brooklyn without even packing a toothbrush. That night we walked to dinner hand in hand, and we fantasized over margaritas and tacos about how I'd be the first woman to be cured of ALS. She promised she'd take care of me, and that my last days wouldn't be spent underneath those awful glow-in-the-dark stars in my old bedroom.
Within seconds of seeing the image of Demiana, my lips curled, my eyebrows puckered, and I wept at the entrance of the Hanging Church. It had been four months since I was diagnosed, and these bursts of uncontrollable tears had mostly subsided. When the news was still fresh, nothing specific provoked my tears—they just came again and again and again. I cried on sidewalks in Manhattan and Brooklyn. I cried on the subway platform and in the subway cars. I cried at my desk and throughout my office. I once cried in a bar, with a pink tequila cocktail in hand.
I even cried before the doctors confirmed my diagnosis. For almost a year, my neurologist seemed confident that as long as the weakness was isolated to my left hand, it was treatable. Then one night in April, walking down the subway stairs, I suddenly had to catch myself when my left leg started to shake and I lost balance.
That night I sobbed the entire way home, passing strangers who probably assumed a boy had brought on my tears. The weakness in my left leg meant I was out of options, but I lied to myself and said I was being dramatic. I turned 29 two weeks later, on May 1, and as I blew out the candles on my birthday cake, I wished for anything but ALS.
On July 9, 2014, during my routine neurology appointment, I finally gathered the strength to tell the doctor about my shaky leg. I can still vividly see the expression in his eyes when he checked my reflexes and my feet bobbed up and down in midair. He took a few steps back and said, "It seems you're displaying upper motor neuron symptoms."
To most, that would probably sound like jargon, but I had read enough to comprehend that those words meant doom. "Are you talking about ALS?" I asked. He nodded.
When he couldn't get me to stop crying, he asked, "Tell me, what's going on in the Middle East these days?"
Shocked, I stopped crying. "It's falling apart. Much like my body," I answered.
I left the office alone and confused. I chain-smoked, drank champagne, and spent the rest of the day annoyed at how inaccurately TV medical dramas depict the conversation I had just lived. The following six weeks I visited the best neurologists in the field, and when they thought I should repeat one test, I suggested we repeat them all. I just didn't want to call Deedee and inflict on her the worst possible news.
At the church I followed a lecture, wanting to learn about the history and powers of the place but unwilling to tell anyone my own story. One of the priests leading the talk spotted me and signaled for me to join the discussion. Although I had stopped crying, he maintained steady eye contact with me as he spoke. He was dressed in all black, with a long silver beard and big brown eyes. I wanted to run up to him, hug him, and list out the aches in my limbs and the pain in my heart, but I didn't. I sat and listened to him describe when the church was built, the details of the narthex, and how a painting of the Virgin Mary on the marble pillar was one of the unexplained things about the church. On one of the 13 pillars in the church was a peaceful portrait of Mary with disproportionately large eyes and ears and a tiny mouth, in the common manner of Coptic art. But, the priest went on to say, no one knew how or when this particular icon had been rendered—because, he said, it was impossible to paint on marble.
"An angel could've painted it, or the Virgin herself, or a human," he explained. "There is no way to truly know."
"Well, that would be considered a miracle," said a woman in her 40s, as if on cue.
The priest agreed and led his tour into another part of the church. I stayed behind and took photos of the miraculous painting of Mary, which was wrapped in clear plastic, as all the nice furniture at my great-aunt's house in Cairo had been when I was young. It may sound silly, but I believed him. I was taking photos with my iPhone, like some awestruck teenage fan, instead of googling "Is painting on marble possible?"
After his speech I wanted to abandon my life in Brooklyn and go scrub floors at the church. Something in the story had made me feel insignificant and powerful at once, had made my pain seem relative. Who cares if I'm dying? Angels were painting.
I sat at a pew for a few minutes, still unable to ask anyone at the church for my own miracle, and then left to go drink from a 2,000-year-old well, inside a different Virgin Mary church in the patchwork of the area. The Holy Family is said to have hid in an underground room next to the well, and the miracle is supposed to be that it hasn't dried up in the intervening two millennia. As soon as I set foot in the church, I wept again.
I was pointed to a volunteer with crooked teeth named Maximus Mahros who manned the well at the church—he boasted about all the miracles he'd encountered in his time as a servant. A month before, he claimed, a terminally ill man had come to him to pray to the Virgin Mary and drink the salty water. When the man returned a week later, he told Mahros that he'd been healed. His doctors, Mahros said, deemed it a miraculous recovery.
"Would you like some water?" he offered, and I handed him a bottle to fill from the old paint bucket he lowered into the well. I chugged the water, and my face must have betrayed suspicion, because Mahros continued: "He called me today and said he'd come by next Sunday to show me his x-rays and blood work."
I asked for this mysterious man's number, but Mahros became evasive. He shifted his story, said that he didn't have it. He insisted that the man called him and never from the same number. I stopped myself before I asked about caller ID. "But he's coming next Sunday," he assured me. "You should come by and speak to him directly." I agreed and left.
I spent the following day touring churches and hearing about miracles that had supposedly been worked upon others, sobbing in each place from the minute I walked in. I went, as I had always wanted, to Zeitoun and sobbed. I sobbed as I collected oil for my wilting limbs. I even sobbed when I saw other people praying. I wrote pieces of paper with my name on them, and I sobbed as I placed them next to the icons and remains of saints. That would be the last time I recognized my handwriting. ALS would destroy my penmanship just a few weeks later.
Traveling through Cairo traffic and randomly crying at religious sites had wrung all the energy out of me. My right hand was also rapidly deteriorating around that time. Putting on socks went from a three-minute to a five-minute to a ten-minute chore. The Muslim Brotherhood had called for mass protests that Friday, and former president Mubarak's trial was scheduled for that Saturday. The entire country was on edge. Even the thick pollution that lazily idled over Cairo seemed anxious.
When Deedee arrived, eight days after I did, her presence helped palliate my grief. I took her to the well, where Mahros seemed surprised to see me, even though he was telling the same story he'd told me to other visitors. He said I was too early, because the man must have been attending Mass. I took him at his word. As Deedee and I went to have some coffee, she admitted that she believes in the supernatural and the possibility of miracles. I was happy, maybe even a little relieved, that she didn't hold my cynicism in her heart. Two unfiltered coffees later, Mahros was ignoring my phone calls, and it became evident that either the man wasn't coming or he didn't exist.
Deedee loved the idea of seeing her namesake's relics, so we walked to the Hanging Church to light candles and continue my hunt for miracles. Saint Demiana's remains are locked in a glass case underneath the icon. They're concealed in a foot-long velvet tube that's embroidered with gold thread and smells like dried roses. Deedee squeezed my name into the glass case.
A few minutes later, I asked a tour guide to tell me the story behind the Virgin Mary on the marble, hoping to again bask in the comfort of angels painting. Instead, he described a technique for painting on marble. He had no idea that his words were vacuuming all the magic out of the church for me.
He did tell me about a Coptic convent nearby to which a Muslim optometrist supposedly prescribed visits to suffering patients.
I asked for his name or number, a nonbeliever still doing my best to believe. After Mahros and the magical marble painting that wasn't magical at all, I was back to being the skeptical weirdo from New York.
He didn't even have the doctor's first name. He asked a few other people who were familiar with this phenomenon, but since no one verifies miracles and their faith is enough, nobody knew his name.
"You should go to the convent," one of them said. "The nuns would definitely know."
The Nativity Fast, when Coptic Christians give up all meat and dairy for the 40 days leading up to Christmas, had just begun, which meant the convent would be closed and the nuns would be praying. But something told me to chance it. When we got there, the iron gates were locked. Still unable to say why I'd really come, I told the guard that I was an American journalist reporting on miracles. He insisted that no visitors would be allowed in. I told him we wouldn't be long and asked whether the mother superior could make an exception. After a few minutes of silence, the iron gates opened and we entered into what felt like Eden.
I felt a strange sense of accomplishment that quickly vanished when I saw a young couple holding a baby in the middle of the convent. The bags under their eyes made it seem like they were deprived not only of sleep but of joy. Their baby looked too small to be out in the world, and they were clearly visiting to bless their child and pray for their own miracle. The sight sent the grief I had so proudly overcome rushing back, but Deedee was right next to me, so I held my tears.
"I'm wondering if you could give me the name of the Muslim doctor who prescribes visits to this convent?" I asked, but before they spoke I knew the answer. They had never heard of the doctor or even the tale.
"Don't believe everything you read on the net," one of them said to me in a comforting, hushed tone.
"Well, I have a second inquiry," I said, finally able to form the question. "Is there someone who could pray for me?"
The same nun began to write down my name, and when she asked me what was wrong, the only words I could form through my sobs were, "The doctors can't do anything for me." I saw that I'd infected my sister with my tears. She walked over and held my hand. The nun asked whether we were sisters, and we nodded in unison. Deedee kept squeezing my palm to comfort me.
Maybe miracles, like anything else, are relative. In my early 20s I agonized over carbs and boys, but now my thoughts only beg my body, "Please don't forget how to walk. Please don't forget how to walk. Please don't forget how to walk." Maybe my miracle is that my mother is living through her sadness—not by physical strength, love, or even a higher power, but by hope. Hope is what keeps us all alive, a beacon in a time of darkness. It's the most powerful force that I've ever encountered, and for some, nothing embodies hope more than prayer.
I waited for the nun to give me the speech about faith, about how I might have strayed from God, about how this "test" was only temporary. She didn't say any of that. "We don't live for this life," she told me. "We live for the afterlife. I wish I knew I would get to meet Jesus tomorrow."
And even though I'm young and agnostic and scared more of a wheelchair than of death, her words were more comforting than the promise of any miracle.