My Name Is Mahtob

by Mahtob Mahmoody

  One would never know from her lighthearted manner that Anja had lived through the horrors of World War II in Germany. How could someone who had seen such hell on earth embrace life with such joyful abandon? “We’ve got to be tough,” she was fond of saying, and she was.

  Anja was waiting with Mom at the Charles de Gaulle airport when Bob and I emerged from customs. They gasped when they saw me. I was expecting smiles and hugs and instead received expressions of shock and concern.

  Mom carefully examined my face, turning my head from side to side. “What happened?” she whispered, taking in my red and blistered appearance.

  “It’s nothing,” I insisted, “Just a little sunburn.”

  Both women stared at me, aghast. Their motherly instincts told them otherwise. Mom scheduled an appointment with a dermatologist as soon as I returned to Michigan a few days later. She was still on tour, however, so Lori took me to the doctor. Dr. Wegman’s concern was evident the instant he opened the door.

  He sat on a stool wearing a lab coat, with a pair of tapered binoculars perched atop his head. He was goofy in a good way—extremely intelligent yet approachable. I warmed to him immediately. Examining the rash that cascaded over my nose and down my cheeks, he ran through a whole host of symptoms.

  “Headaches?”

  “Yes.”

  “Joint pain?”

  “Yes.”

  “Low-grade fevers?”

  “Yes.”

  “Sensitivity to the sun?”

  “Yes.”

  “Changes in appetite, hair loss, fatigue, tiny splinters under your nails?”

  “Yes, yes, yes, and yes.” I was confused. I was there for a skin rash. What did all this have to do with anything?

  “Hmm,” he said, studying his clipboard. “Tell me a little about your family’s health history.”

  “You’re going to need more paper,” I joked.

  “My grandpa died of colon cancer,” I started and kept rattling off one ailment after another.

  When I paused he patiently prompted, “What else?”

  “Mom has ulcers. My uncle has heart disease. My aunt has diabetes. I think someone has glaucoma.”

  “Think really hard. There must be something else.”

  “I think everyone has arthritis. Oh, and my grandma has lupus.”

  I’d barely uttered the word lupus when he exclaimed, “There it is! I knew it.” He had suspected that diagnosis the second he laid eyes on me.

  “We’ll have to run some tests,” he told me. “You’ll need a rheumatologist. The best in the business is Carol Beals. She’ll take excellent care of you, but it’s hard to get an appointment with her. The last I heard she had a six-month wait list, and we can’t let this go that long. But don’t worry; we’re friends. I’m sure she’ll be more than happy to discuss your case with me. In the meantime . . .”

  Dr. Wegman was a talker. It says something wonderful about him that he went into such a lengthy discourse with a thirteen-year-old.

  Suddenly so many things made sense. It was almost a relief to know that the random list of minor maladies that had plagued me over the years had a central cause. I even took comfort in knowing that it was lupus and not teenage laziness causing my fatigue. In my naïveté, I assumed one disease was all a person would get in life and it was inevitable that each person would eventually get one. So it wasn’t so bad to know what mine was. At least I didn’t have to wonder anymore.

  Mom’s reaction couldn’t have been more different from mine. She had witnessed Grandma’s suffering with this autoimmune disorder. My parents were friends with a family whose young daughter had died from it. So Mom had enough experience to know that lupus was capable of robbing me of much more than quality of life. Her mind jumped directly to the worst-case scenario.

  Lupus is difficult to diagnose. There are three types, and no two people present with exactly the same symptoms. To further complicate the issue, many symptoms are also indicative of other autoimmune diseases. There’s a lot to rule out, and often it can take years to get a clear picture of what’s going on inside a person’s body. I was incredibly blessed to stumble into Dr. Wegman’s office and receive a diagnosis on my very first visit. I was even more blessed that his friend, Dr. Beals, as a courtesy to him, got me in for an appointment in less than two weeks.

  In Dr. Beals’s office, I sat on the end of the exam table wearing a threadbare hospital gown and trying to look calm as I waited to meet her for the first time. My fidgeting fingers and swinging feet betrayed me. Mom, who had flown home as soon as she heard my initial diagnosis, sat in one of the room’s teal wingback chairs. Lori occupied the other.

  The instant Dr. Beals entered the room, my fears were allayed. She was a sharp woman, extraordinarily warm and yet in complete control. When I left her office that day, I felt energized and optimistic—we had a plan.

  First we would do thorough lab testing to get a handle on what we were up against. Then, together, we would review the information and decide which treatment approaches were in order. I would certainly require medication, at least for a period of time. I would also need some lifestyle changes and, above all, a positive attitude. Dr. Beals assured me that we would be decisive in our attack on the disease, and together we would find a way to make living with lupus manageable. In short, we would face my diagnosis the same way Mom and I had faced our security risks over the years. Lupus was something I would have to learn to account for on a daily basis, but it would not stop me from living my life.

  The lab results were shocking. By all accounts I should have been much sicker than I actually felt, which told Dr. Beals that we had caught the disease just as it was poised to ravage my body. Our approach would have to be more aggressive than she’d hoped.

  It was clear by the progression of the disease that it had been simmering under the surface for quite some time. In hindsight, we were able to pinpoint unexplained symptoms that dated back at least five years. Abnormalities that we had brushed off as inconsequential suddenly took on a whole new significance.

  In a matter of weeks, my body began to give out. A trip to the Mayo Clinic revealed that I had the most serious form of the disease, systemic lupus erythematosus, the type that attacks both the skin and the internal organs. There was no part of my body that was beyond its reach.

  They say disease is representative. If that’s true, it should come as no surprise that even within my body I was quite literally under the constant threat of attack from my own flesh and blood. My dad remained quiet, but the threat he posed was ever present. The same was true of my lupus. Just as my family had spent years guarding me with hypervigilance against an attack from my father, they now scrutinized me for any sign of an attack from within.

  Anja took the news of my diagnosis especially hard. I was like a granddaughter to her, and by her estimation I had already suffered more than enough. After receiving the news of my declining health, Anja was visited by Dr. Franke, a German doctor who was seeking to have his book published. He had multiple sclerosis and had been completely bedridden when he developed a treatment that gave him back his life.

  “What do you know about lupus?” Anja asked.

  “Well,” he told her, “lupus and MS are in the same family of diseases.” Although it had never been tested, he was certain his treatment could cure both. In fact, he was convinced with further experimentation it would be found to cure all autoimmune diseases.

  Hearing that I was the patient, he was eager to treat me. Not Without My Daughter was a bestseller in Germany, and Dr. Franke believed that if he could successfully treat me and write about it, he would have no trouble getting his own book published.

  Anja eagerly shared her discovery with us, and for months Mom, Dr. Beals, and I waffled over whether or not to try the treatment. It was experimental. No one with lupus had ever used it. It hadn’t been empirically studied, and the long-term effects were unknown. Maybe it wouldn’t work. Maybe it would only hasten my death.

  Dr
. Franke assured us that deoxyspergualin (DSG) was all natural. There would be no negative side effects, and if we found the right combination of dosage and frequency, he felt confident it could cure me. Still, it was a risk we weren’t ready to take. First we would try more established treatments.

  I set out to continue my life as normally as possible despite the added challenges of living with a rapidly progressing autoimmune disease. Mom, however, began to treat me as a patient, and a very ill one at that. She stopped chastising me for being lazy and instead nagged me to rest around the clock. She was also troubled by the fact that I refused to say I was sick. Instead I would say, “I have lupus.” She took that to mean I was in denial, so she took every opportunity to remind me. I saw things differently. I was trying to put a healthy spin on the situation. I pushed her to continue with our normal routine, which for her meant resuming her business travels and for me meant school, sports, and friends.

  My brothers were devastated by the news of my failing health. They worried excessively about me. They kept track of my doctor’s appointments and stayed on top of the rise and fall of my lab results. And they made a point of spending more time with me.

  One day Joe picked me up to take me to his house for the night. We drove through farm country with the windows rolled down. Heavy metal blared over the speakers as we sped past cornfields and dairy farms. Suddenly he brought the car to a screeching halt, opened his door, and hopped out.

  “What are you doing?” I asked, confused.

  “You’re driving the rest of the way,” he announced as he made his way to the passenger side of the car.

  “Awesome!” I exclaimed, bounding out of the passenger seat and practically skipping to the driver’s side. I had to pull the seat forward to reach the pedals. Gripping the steering wheel with both hands, I put the car in drive. Okay, I thought, so far so good. I stepped too zealously on the gas pedal. The car lurched forward. Overcompensating, I slammed on the brakes, and the car jerked to a stop.

  Laughing hysterically and probably rethinking his decision, Joe talked me through the steps, and I tried it again. It went much more smoothly the second time around. My confidence increased, and my foot grew heavier on the accelerator as I aimed the car straight down the road. When we came to Joe’s corner, I turned the wheel. What I didn’t know was that it is generally advisable to slow down before making a sharp turn.

  “The brake—hit the brake!” Joe yelled as he grabbed for the wheel. “Keep turning! Slow down! What are you trying to do, kill us?” The tires squealed, fighting to cling to the pavement as we whipped around the corner. I was still swerving from side to side, trying to straighten the car when we came to an abrupt stop in Joe’s driveway. We were both relieved to have survived our adventure.

  John made it his mission to keep me laughing. Of all his comedic stunts, perhaps my favorite was when he juggled eggs. As soon as he started for the refrigerator with that silly sideways grin of his, I knew what would follow, and so did Mom.

  “John,” Mom warned, “don’t you dare!”

  We all knew there was no stopping him. He liked to get Mom going just as much as he liked to send me into uncontrollable fits of giggles. I sat at the kitchen counter watching, my vision blurred by tears of laughter as he juggled two eggs with one hand and extended the other in front of him to fend off Mom’s attempts at protecting her freshly mopped floor.

  “Mom, leave him alone,” I begged. “You’ll make him drop the eggs.” Knowing it was a lost cause, Mom stepped aside with a wry grin. Deep down, she enjoyed John’s silliness as much as I did. Free from Mom’s interference, John added more eggs and juggled with both hands, making goofy faces and telling jokes as he went. Rarely did he drop an egg, but if he did, we happily cleaned it up, the whole time laughing about the look on Mom’s face when John reached for the refrigerator door.

  In November 1993, Mom wanted me to join her on a business trip to Japan. “Japan will always be there,” I told her. “This will be my last chance to play in a basketball tournament with my team. Mr. Roecker says we’ve got a good shot at winning, and there’s no way I’m missing it.”

  Ever since Mom announced our move to Alpena, I had agonized over finding a way out of it. I didn’t know it yet, but that basketball tournament would show me the answer.

  Salem was part of the WELS (Wisconsin Evangelical Lutheran Synod), and basketball teams from WELS grade schools all over the state had come to Michigan Lutheran Seminary (MLS) in Saginaw to vie for the championship. MLS was not a seminary in the familiar modern sense. It was our synod’s high school—a boarding school where classes were taught at a college-prep level and aimed at preparing young people for future careers in the ministry.

  Mr. Roecker, our coach, had been my seventh grade teacher. He had a gift for making his students want to learn. He was the reason I played basketball. I was not athletic, but I loved being on Mr. Roecker’s team.

  We won the championship, and as with many other moments of my life, Mom celebrated with me from afar. No matter where she was in the world, she remained attuned to the details of my life. Regardless of hectic schedules and time differences, she found a way to call me every day, and in between phone calls she even managed to send me little notes to let me know she cared. From Japan she sent me a postcard with a picture of two young women, dressed in traditional Japanese style, having tea in a garden beneath a red umbrella.

  11–12–93

  Dear Mahtob,

  I saw many little girls dressed in kimonos + wearing makeup for a special holiday. Really beautiful.

  CONGRATULATIONS on your championship.

  Miss you, love you, see you soon.

  Love,

  Mom

  At school the following week, Mr. Roecker complimented me on the job I had done at the tournament.

  “Have you thought about going to MLS? I think you’d have a chance at making their basketball team.”

  “Do you really think so?”

  “Sure. And you want to be a teacher, right?”

  “That’s all I’ve ever wanted to be, since first grade.”

  “Then you should definitely consider MLS. I really think it would be a good fit for you.”

  “There’s no way Mom would let me go. She’ll say I’m too sick or it’s too dangerous for me to be on my own if my dad shows up.”

  “Well, think about it. If you want, I’ll talk it over with your mom. Maybe we can find a way to make it work.”

  I did think about it. That was all I thought about for days, and the more I thought, the more confident I became that Mr. Roecker had offered me the perfect solution.

  Moving, it seemed, was inevitable. Mom still insisted that after my eighth grade graduation, we were going to live in Alpena. If I was going to have to move, why not do it on my terms? If I went to MLS I would live in the dorms and Mom could live wherever she wanted. That was exactly what I told her when she called from Japan.

  “I’m going to MLS.”

  “What?” she asked in disbelief. “You don’t want to go to MLS.”

  “Yes, I do.”

  “But you’d have to live in the dorms. You don’t want to live in the dorms.”

  “Yes, I do.”

  “You’d have to share a room with someone you don’t even know, and you’d have to share a bathroom with a whole floor of girls.”

  “My mind’s already made up. Mr. Roecker says I should try out for basketball. He thinks I could make the cut.”

  Wise enough not to tell me no immediately, she said we would talk about it when she got home.

  By the time Mom returned, I had honed my argument and enlisted the support of not only Mr. Roecker, but also my pastor and my principal. Mom reluctantly agreed to allow me to attend MLS—if I was healthy enough. I resolved to be healthy by then.

  CHAPTER 19

  I did my best to continue with my normal life, but despite all our efforts, by Christmas lupus had attacked my kidneys. I was a little more than a year into my batt
le and had tried virtually every available treatment, but I continued to lose ground rapidly. I looked like a giant red tomato from taking such high doses of steroids. My stomach was bloated and painful. My joints ached. My hair was falling out. I experienced excruciating migraines.

  My skin alternated between an unremitting itchiness and a dreadful stinging, burning sensation. The instant the sun’s rays touched my body, I felt as if I were being pricked by hundreds of hot pins. Even five minutes outside was often enough for any exposed flesh to blister; then it would flake off in thick crusty layers and ooze. I would stand in the shower for an hour or more, letting the cool water soothe my irritated skin. Eventually, though, I would have to get out of the shower, and the agonizing pain would return with the first touch of the towel. The only true relief was sleep. And so I slept.

  When the last half of my eighth grade year came around, I was too sick to attend school full time, some days sleeping around the clock. Mom would wake me every four hours to swallow more pills and take a few sips of milk. The combination of milk and the warm pastiness of my mouth turned my stomach. I would have preferred water, but Mom insisted I needed the nutrition. I was taking twenty-six pills a day at that point. I knew them all—spellings, dosages, frequency, and purpose. I also knew their many side effects, which medications I took to counteract them, and which necessitated special dietary restrictions.

  Even though school was more than my body could handle, my teachers made sure I kept up with my coursework and my catechism lessons. On occasion I was able to attend classes for an entire week. More often than not, though, my attendance was more sporadic. The harder I pushed myself, the longer it took me to recover from the exertion, but with my teachers’ efforts I was able to graduate from Salem and—more important—to be confirmed with my class.

  In our church, confirmation is a public ceremony following a very specific series of instruction in the basics of the Christian faith. It is the time when those who were baptized as babies or as children “confirm” their understanding and proclaim their decision to live as followers of Christ. This instruction was carefully led by the pastors of our church.