One morning, I put my finger under my daughter’s nose to ensure she was breathing. Her face contorted in pain even as she slept, I felt terrified I’d lost her. I had to head to work and leave her like that. I had no choice, no money for care, and no more sick leave. Put a roof over our heads or stay home again for the sixth time in a month without pay for the mounting medical bills. It was an impossible decision. That day was also the climax of a story that began years earlier.

Back in 2010, she asked for a back rub. She lay on her stomach with her arms bent under her head for a pillow. She sighed with relief as my hands pressed on her muscles, sliding them up then down rhythmically, her skin moving like a wave under my thumbs. No there, Mom, she’d say. She’d point with her fist and extended thumb where in her lower back the pain had the most foothold. I gave no thought to the massages other than something she needed after a long day at school or a particularly strenuous workout. Our family has swayback, an exacerbated curvature in the lumbar 4 and 5 regions, maybe she inherited that, I thought. I even considered my own stress which lodges itself in my shoulders and turns the sinew to stone. Maybe she’s like me, tense all the time. But soon she’d say she’d had enough rubbing—her aches abated. Just normal wear and tear, I thought.

So, the days turned into months. I rubbed her legs, arms, and back regularly now. She asked me to press harder, deeper. Her complaints of pain were quietly expressed, intermittently too, so I surmised growing pains still. She was 16. But I had no better explanation, and she had no words for it either, except to say, “Mom, can you come rub?” The request sounded blasé at times, not demanding or laced with fear, so I didn’t worry too much. I was busy grading papers after work, going to graduate school, and keeping a household running. As a single mother, I was stretched thin. I’d tell her just a minute, after I finish cleaning the bathroom, or folding the laundry, or paying the bills. She’d wait patiently. Sometimes, I’d forget, and she wouldn’t remind me. When I did respond promptly, she said softly, “I just don’t feel well, Mom.” I’d ask what she needed, would a Tylenol help? She said no. She’d see if it would pass. I said there was no point in suffering and to take something. She’d decline. She’s tough, stubborn, brave in the face of adversity no matter how intense. I respected her wishes.

Next, going to school regularly became problematic. She missed days due to “illness,” the official records said. When she did attend, she begged to come home during the middle of the day, voice shaky, tears welling in her eyes. The school suggested she enter an alternative education program—that traditional high school might not be the place for a “student like her.” I was incensed. My daughter wasn’t a social deviant like the kids who smoked pot behind the football field, nor was she skipping school to go shopping with a group of other wayward sophomore girls. She was in pain. She was unwell. Something was wrong but most definitely she was not one of those kids. Your daughter is smart, the cadre of school officials chimed in. It would allow her to stay home, finish school, and be happier, they added. My daughter was emotional often, and in a moment of anger threatened she would drop out. My hand was forced, and I let go of my dream of seeing her in a cap and gown. She would finish her education at the alternative school, then take the high school proficiency test. After eight months, she graduated with no fanfare. She slept peacefully in between bouts of pain. Embarrassed and ashamed that I’d been preoccupied and even self-centered, I recognized something in myself and her. Our lives were changing. Something was moving us in a new direction that seemed a misty and murky path.

She often said she wanted to be alone. Given she was now 18, she reminded me that adulthood meant privacy. Even though we lived together, her room might have well been an apartment in New York. She’d say “What?” with annoyance when I entered unannounced. Was I disturbing her watching videos on her computer, or asking her too frequently if she needed anything, or intruding when I said I missed her and that the house was too quiet? She spent her time in her room alone. I sat in the living room reading. She said she liked it that way. I said I didn’t. Pain had clutched her nerves and twisted them into anger. Her anger knotted me up in anxiety and dismay.

She coped with her illness by self-imposed, solitary confinement. She kept me away because I twittered around with my desire to fix and solve. Mom, I’m okay. Just leave me alone, she’d politely request. Or when the pain had ravaged her body, she raised her voice demanding my silence. In a momentary shift, she called for me and my twittering was welcomed, soothing and secure. And when the pain finally overwhelmed her, she pleaded for help. I’d run to her room. Mama’s coming, love.

More time passed, and my daughter tried to work. She is industrious besides academic. With her newfound freedom from school, she worked as often as a part-time employee was allowed—and as often as the pain allowed too. She is a dedicated employee, a hard worker. She loved her job and the pain had let her alone for some months. She announced one day that she wanted to major in business and attempted to go to community college.

She came home from school one afternoon in a huff. She headed straight to her room, took off her clothes, put on her pajamas, and plopped on her bed, seething and clenching her jaw. I inquired carefully what had happened at school. Her medical history includes mental illness, both bipolar and self-harm. That day, it was warm, and she wore shorts. The scars on her hips revealed themselves as she sat down. When the boy next to her accidentally dropped a pencil, and saw her pink slashes, he whispered he was a good listener and could help. My daughter gathered her books, left the classroom, and never returned. It was just as well. The pain had come back with a vengeance.

One Thursday afternoon, she phoned me during my prep period and asked to go to the doctor. My maternal alarm went off. She never wanted to see a doctor. She softly said, as she always did these days, “I don’t feel well.” It was clandestine speech that masked something more meaningful. I pressed her for symptoms. All she could do was repeat the phrase “not feeling well,” coupled with “feel a lot of pain, want to see a doctor.” I left work immediately and drove like a bat out of hell to get her. She’d been lying in bed most of the week, getting up only to eat and go to the bathroom. She had quit her job because she couldn’t stand at the register any longer. She quit seeing friends because putting on makeup, doing her hair, and getting dressed left her exhausted. She quit reading because concentrating was hard, and her vision was blurring frequently. She even quit eating some days because the nausea left her stomach swimming inside her.

That Thursday afternoon, I realized I’d missed something enormous. Her simple statement of not feeling well was a rocketing flare, signaling, trying to communicate as best as she knew how after all those years of solitude that she needed me to solve and fix it now. I’m not a neglectful mother, but, in that moment, I felt like I’d abandoned her. I’d misread her like a driver pulled over for blowing past a stop sign, saying “I just didn’t see it.” I chastised myself for being preoccupied, too busy with my own life, for being blind. But it was time for action, not wallowing. There was a battle to be won. I needed to be the cavalry.

At the doctor’s appointment, we learned our favorite physician was now supervising residents and would not be seeing us. We would see a resident. Disappointed that we didn’t get our doctor with his cheerful bedside manner and patient listening, we awaited the resident. By contrast, the resident was awkward, expressionless, posturing authority which masked a feeling of insecurity I suspected. We’d seen enough doctors in our day, with my daughter’s mental illness, to know when a doctor knew what he was doing and one that had no clue. It’s a sixth sense I have. As an info junkie, I come to doctor’s offices with hypotheses and probable diseases in mind. I question doctors’ diagnoses. I use their terminology to do it, which lets them see I’m not some yahoo without a brain.

The young doctor asked me to leave the room while my daughter removed her top before he examined her. I said no. I gave birth to her, I thought. There was nothing about her that I didn’t know about, except the origins of this pain. I also didn’t want him alone with her because his dead-eyed look gave me the creeps. My daughter agreed I could stay. He left the room instead, knocking at the door after a couple of minutes to come back inside. At 19, my daughter is considered an adult. Doctors won’t talk with me until my daughter agrees to it. Forms must be signed, giving me access to records, to conversations. All I’m good for is paying their bills. The doctor tried to remove me again, looking at my daughter then asking if it was okay that I remain in the room during the examination. I glared at the doctor intently, flashing a look of “you’re dealing with me on this one.” Once again, my daughter granted permission for me to stay.

He examined her lymph nodes, tapping his fingers along her neck and clavicle. He put his stethoscope upon her heart and had a faraway look in his eyes as he listened to the beating in her chest. He moved around her to her back and asked her to breathe deeply, inhaling and exhaling slowly, so he could listen to the air racing in and out of her lungs. He instructed her to lay back slowly, she groaned a bit due to her pain, and he palpated her stomach. He offered her his hand and used his strength against her weakness to help her rise up off the table into a sitting position again. He looked in her ears, nose, and mouth. The standard routine. He then asked about her pain. She explained she didn’t feel good and that she hurt all over. That her joints hurt, and the pain was deep in her bones. That she felt tired all the time. That she had a headache daily. That her chest hurt. That her heart raced whenever she stood up out of bed and that doing so made her light-headed. That she couldn’t eat because she was nauseated frequently. That her back hurt. That her arms and legs felt heavy or often tingled. I had not heard this litany of symptoms. I was shocked at the degree of pain she dealt with daily. She had kept me out, or I had not asked enough questions, or she now found her voice and the words flowed as they just did in a torrent, flooding the room. He asked more about her back pain, her chief complaint. He said he wanted her back x-rayed. I suggested a referral to a spine surgeon too.

A year before, my daughter complained of backaches whenever she had her period, and stomach cramps once it started. She was on a birth control pill to mitigate the pain, but they had stopped working. As I do, I had gotten online and diagnosed her with endometriosis. The gynecologist had suspected I was right. He had done a scan in the office and saw a large blood-filled cyst twisted and pressing on her ovary. This, he had thought, might account for the pain as well, but exploratory surgery would rule out the endometriosis, he said. So, a few days later, she was in the hospital with a scope through her bellybutton, and the doctor moving the instrument and her organs looking for the telltale black spots of the disease. When none were found, the doctor had looked puzzled and stated that the offending cells could be in the lining of her uterus, but that nothing else could be done but pain management. Thus, he sent us to a pain specialist who put her on Percocet on an as-needed basis. By the time we had gotten to our Thursday afternoon appointment with the resident doctor, she had been taking Percocet every four hours around the clock.

The resident doctor’s inquiry shifted once he learned that my daughter had bipolar disorder. His next question burned me up. “Do you have any friends?” he asked. I looked at him and interjected that she did and that she stayed in touch with them online because she couldn’t get out of bed. His next statement was, “Do you think you’re depressed.” I was furious. “Wait a minute. Are you implying that this pain is all in her head?” I fumed. He was blowing her off. She was a mental case to him. This wasn’t physical in his mind any longer. She was manifesting a delusion. She was making it all up. He continued stating she should try and get out more—meet people, get a job. “Listen here, I know when she’s depressed. We’ve been through years of therapy. I know it when I see it. This isn’t depression. This is pain—real pain. She can barely walk. I had to hold her up to get her here. We’ll take the referral to the spine specialist. Thanks.” I dismissed him as readily as he dismissed her pain. The doctor’s arrogant approach melted into compliance with my wishes. He left the room and came back with a piece of paper allowing us to see the specialist. I thanked him again. He said he was glad to have helped. Some help, I scoffed in silence.

I called the spine specialist’s office. The earliest appointment was in two weeks. My daughter rolled her eyes at the news, then rolled over in her bed with her knees to her chest. I sat on the edge of her bed and tried to console her as she cried softly. She said she couldn’t wait any longer. I told her we had to. She said the pain was getting worse. I told her we’d go back to the ER. She said no, I won’t go. I said they can help you. She said they too tried and failed. Then said Mama, please help me. Her crying shook her body as I held her, and her tears, mixed with mine, wet my blouse. And we waited once more.

The two weeks awaiting the spine specialist’s appointment were long. She stayed in bed all day. She slept 14 hours, sometimes 24 hours. She ate one meal a day of crackers or rice—mild things. She drank peppermint tea or Sprite for the nausea and took the Percocet religiously, coupled now with Ibuprofen, per her pain doctor’s order—until he cut her off abruptly, claiming she was a drug addict.

When the appointment with the spine doctor arrived, I held her arm and lowered her into the passenger seat of the car, pulled the seat belt around her, and shut the door for her. As I drove, I glanced at her from time to time while she leaned her head against the door, eyes closed. I dropped her off at the front door of the medical building and instructed her to sit and wait on the bench for me to park the car. The parking spaces were full until the end of the last row. I parked with a jerk of the steering wheel, then zigzagged in and out of parked cars, moving quickly to reach her again. As I approached her, she was bent over, spine curved, head in her hands, rocking back and forth. She looked forlorn, broken, wasted, used up. She wasn’t even out of her teens. My anger at this pain rose. I mentally beat it with a stick and shouted in its face to leave my daughter alone. At her side now, I ushered her slowly into the elevator. She had tears dripping down her cheeks. I tried to hold back my own. I wanted to consume her suffering to alleviate her. Pain, I will take you on. Eat me alive instead. Stop feeding on her.

We exited the elevator and walked like octogenarians to the front desk. The office assistant said we’d be next. I sat my daughter down and she grimaced. She shifted awkwardly trying to find a comfortable position. The minutes took their own sweet time to pass. I waited impatiently until I could wait no more. I told her not to move and that I was going to check with the receptionist about how much longer we had to wait. Just a few more minutes, the woman said. I sat back down frustrated and powerless. Shortly, we heard my daughter’s name called in a monotone questioning. “Coming,” I said. I lifted my daughter slowly from her chair and put my arm around her waist and used the other to hold her hand. The nurse looked at us empathetically as we walked a mile it seemed to reach her. She welcomed us and asked if we wanted a wheelchair. My stoic daughter declined. I said, “Are you sure?” She said she would walk. So, we moved in shuffles and stops until we got to the exam room.

She sat on the exam table and laid on her side, curled up in a fetal position, eyes closed, tears moistening the paper sheet below her. I stroked her hair and said we would get answers here—trying to console her as well as myself. The doctor came in quickly which surprised me. The man was kind and touched my daughter gently. He looked at her x-rays and said everything looked normal. But, I told him, whatever was happening to my daughter was not normal. He agreed wholeheartedly. “Mom, she’s miserable,” he said. “I can see that. She doesn’t have a spine problem though. I think she has a rheumatoid problem. Don’t bother seeing anyone around here. Take her to UCLA immediately.” In that moment, I could have kissed the man. His kindness, his attentiveness, his appreciation for her pain made me weak with gratitude. My own breath escaped me at the realization that this pain was an illness more serious than the resident thought, more all-encompassing than the gynecologist could detect, more necessary to medicate properly than the pain doctor would do. The hours I spent researching potential causes and mysterious illnesses, the gut-gnawing suspicions I had—in this moment, I felt vindicated and righteous. That afternoon, I called UCLA and by God’s intervention, karma, and everything spiritual, we had an appointment the next morning.

I drove two hours from my small town to LA. I hated LA. The traffic was horrendous. Uncertain of my whereabouts with my daughter collapsed in the backseat, I merged from freeway to freeway until an off-ramp lead to a busy street and the medical building’s parking lot. She tried to walk normally in a show of control around the other people entering and exiting the building, but she had to stop to catch her breath and I told her to take her time. The more we walked, the slower her pace became, and the more we’d take breaks. We finally reached the doctor’s office. We were greeted warmly and taken to the exam room immediately. We passed by two women in white coats and I wondered who would be ours. My daughter moved slower than she ever has. Her hollow eyes showed the dim flicker of determination to fight—yet her body, ravaged with pain, was losing the round. The usual preparation before the doctor arrives was done—questions about medication, blood pressure taken, oxygen level assessed. She curled up again on the exam table, her habit. She said she needed to sleep. She was exhausted from walking. Soon, she began to snore.

The doctor was young, and the first woman we’d met on this journey. She smiled and greeted us with a warm handshake. For some reason, I felt like we’d arrived home—like this office was the place we were always meant to be, like this place would be the gathering of our medical tribe. All would be well now. It was a feeling that I wished to be fact.

The doctor went through the usual exam routine but stopped and did something new. She pressed up and down my daughter’s spine—joint by joint—looking into her eyes as my daughter winced in pain. Yes, it hurts there. Ow! The doctor gently squeezed my daughter’s joints and asked if her feet and hands had always been this cold. She ran her hands across her muscles, pressing gently, and asking if this hurts or that hurts. When my daughter answered yes to every question, and when the doctor stopped touching her, the doctor turned to her computer. She typed rapidly. She put her hand on her chin and moved closer to the screen to read. I was positioned in the room to see the screen as well. I also moved closer to read it. Ankylosing spondylitis, it said. On the split screen, it said lupus. The doctor turned to us and said she wanted blood work done the next morning, and she’d see us afterward. She left the room after shaking our hands sincerely. Now, to find a hotel in a town that confused me. I searched Google. By divine intervention, there was a Marriott down the street. I said a prayer of thanks and booked a room. Despite having nothing but the clothes on our back, we felt renewed.

We drove to the hotel and she fell asleep immediately. My daughter was spent. I kissed her cheek and turned off the light. “Sleep well, baby,” I said. Tomorrow would yield answers, I trusted. I prayed the prayers of a desperate, lapsed Catholic hoping God hadn’t forgotten her.

That next morning my daughter was diagnosed with lupus—a cell-sabotaging, organ- cannibalizing, nerve-inflaming autoimmune disease. As the doctor said, her body was eating itself and wouldn’t stop. The signs were clear, the results affirmative, the doctor positive. While the diagnosis is grim, she will live. She will live on opioids or other such drugs for the pain, beta blockers and cardiac medications for heart rate irregularities, powerful steroids and immunosuppressants to mitigate the disease’s power, and chemo, all to fight back her immune system’s attack. And her life will be full of limitations—wearing a mask in public to avoid illness, days of bed rest during flares, and a special diet meaning no more junk food runs with friends—but it could be managed. There would be days of relief amidst days of the excruciating pain, but she might get her life back one day soon. There might be more good days than bad—we hoped.

My daughter talks openly, descriptively now. And I pray often. We are closer and have no secrets between us. Her team of doctors is fighting back the disorder with vigor which keeps us reassured. Their advice is just a text message away. And I sleep more at night. Where once there was only pain, courage has appeared, fortifying us through this fight with lupus.

Annette Roy Davis subsists on a steady diet of reading and writing. When not consuming all things literary, she is a mom to two wonderful adults. Armed with a couple of graduate degrees in English literature and creative writing, she spends her weekdays trying to persuade teenagers that literature matters. She does all this from sunny Southern California.