Honorable and integrity-filled, Pastor Mueller is one of the wisest and gentlest men I’ve ever known. The world would be a much better place if every child had the benefit of growing up under the guidance and instruction of such a man. Of all the places God could have led us, I am eternally grateful that he saw fit to deposit Mom and me into Pastor Mueller’s care. He knew each student well, and after much prayerful consideration he selected a confirmation passage for each of us.
Eight years earlier Pastor Mueller had given Mom Bible instruction, and when the time came for her to be confirmed as a member of our church he had given her the verse, “If God is for us, who can be against us?” (Romans 8:31). Every time her passage was read in church or mentioned in a sermon or brought up in conversation, Mom would nudge me with a smile and remind me that was her confirmation passage.
For me he chose Ephesians 2:8–9: “For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God—not by works, so that no one can boast.”
That verse was true of my life in so many ways. God had saved me from my father. He had saved me from the war between Iran and Iraq. During our escape, it had been God who delivered us safely home. Through my baptism, he had saved me from my sins. And whether I recovered or whether lupus took my life, I would be eternally saved because of God’s grace.
After our confirmation service, I sat in the church basement and sobbed uncontrollably. Since I had returned from Iran, Salem had been a source of unwavering consistency in my life. The teachers had guided me through traumatic times and, in the process, taught me how to love and forgive. Cutting ties with the school and my classmates left me feeling lost and disoriented.
This was a very dark time for me. As usual, though, my family rallied around me, doing their best to lift my spirits. While John kept me laughing, Joe and his family made a point of increasing their visits.
Joe’s wife, Peggy, had a son named TJ from her first marriage, and together Joe and Peggy had a son named Brandon. From the time he was born, Brandon and I had shared a deep connection. When he was at “Grandma Betty’s” house, everything was “Mah-Bob” this and “Mah-Bob” that.
It was hard for Brandon to understand why I started sleeping through his visits. I would drag myself from bed to the couch, but even there, I wasn’t strong enough to hold my eyes open. Brandon would tiptoe to my side and gently place his tiny hand on my face. “Mah-Bob,” he’d whisper, “Mah-Bob no nap.”
I wanted to jump up and play with him, but my body was just too heavy with fatigue. I couldn’t even open my eyes or manage a faint smile. “Mah-Bob,” he persisted, patting my cheek, “no nap.” I heard his voice, but it sounded as if it were coming from miles away. My heart ached.
He implored me to wake up until Mom came to usher him away saying, “Shh, Mahtob’s tired. We need to let her sleep right now.”
Even as he was being led out of the room, he pleaded, “Mah-Bob no nap!”
I was losing my battle with lupus. Mom tried to shield me from this reality, but I could feel it. First my body failed me and then my will to live. I had accepted the fact that I was dying. In truth, I was too exhausted to care.
Eventually Dr. Beals declared we had nothing left to lose. I was just getting sicker. Nothing seemed to be stalling the progression of the disease. If we were going to try Dr. Franke’s experimental DSG treatment, it was time. Mom immediately made the arrangements for us to fly to Germany.
The trek to Munich was exhausting. When Mom and I met Dr. Franke, my body was scarcely strong enough to support the weight of my head. We were in the opulent lobby of Hotel Vier Jahreszeiten, surrounded by dark wood, marble, and stained glass. Too weak to scoot the heavy chair up to the table, I sat on the edge of the seat and leaned forward to rest my head wearily on the cool wood. I knew it was rude, but I was so drained I just couldn’t help it.
Dr. Franke wasn’t what I had expected. He looked like a Disney villain, with long, knobby fingers that curled over the end of a gnarled wooden cane. His hollow eyes were sunk deep into his skull, creating dark circles in his chalky skin. Only one corner of his wrinkled Oxford shirt managed to remain tucked into his pants. He was a disheveled mess, a mad scientist in form and function.
There was a jerkiness to the man’s movements, and he waged a never-ending battle against the hair that fell unkempt in his eyes. When he wasn’t laboriously pushing it aside with the palm of his hand, he was grotesquely cracking his wrists. A half turn down and to the right, then a quick flip up and out . . . pop. His body was creaky, and I wondered whether this was a side effect of the treatment. He had promised there would be no negative side effects, but he didn’t seem to be aware of his creakiness. Would the same thing happen to me?
Dr. Franke had brought along his business partner. Dr. Regensberger, who wore jeans, riding boots, and a black leather jacket. We learned he was a motorcycle enthusiast with a Route 66 obsession.
Anja had come for moral support. Her translation skills weren’t necessary because everyone at the table spoke perfect English.
Dr. Franke, surprised by the advanced state of my illness and fearing that the disease had already done too much damage, was reluctant to treat me. After Mom’s and Anja’s pleas he capitulated, but not without issuing a sober reality check. He told us not to have high hopes—not to have any hopes at all.
The next morning Mom, Anja, and I reported to Dr. Franke’s small and sterile clinic. I felt like Goldilocks sitting in Papa Bear’s seat as I half-reclined in the massive vinyl-upholstered clinic chair. New Kids on the Block was singing “step by step, oh, baby . . .” into my ears, courtesy of my new Walkman cassette player, and the latest Babysitters-Club paperback rested unopened on my lap. My right arm was outstretched on the armrest, the IV needle disappearing into the plumpest vein in the crook of my elbow. Even my best vein was pitifully shriveled by disease. The nurse had been forced to use a butterfly, a tiny needle I knew well by now.
It was a warm day, and Mom and I watched in amazement as the children from the preschool next door stripped down to their birthday suits and splashed around in a kiddie pool. A woman held her thumb over the end of a hose, fanning the water and creating a rainbow for the children to run through. Such a thing would never be permitted in an American preschool. With concern, Mom drew Anja’s attention to the scene.
“What’s the matter with it?” Anja asked. “Look at them. They’re having fun.” They were also providing a welcome distraction as we nervously waited on my reaction to the medication. Knowing Anja’s playfulness, I’m surprised she didn’t run out to join them.
About forty-five minutes into the treatment, a crowd from the clinic started to gather around me. The nurse, the receptionist, and the two doctors scrutinized my face and then huddled together, whispering in German. I couldn’t tell if this was a bad sign or a horrible one. I silently took stock of my body and didn’t feel anything unusual. Remembering the book on my lap and happy to have a distraction, I opened it and started to read. It was hard to concentrate because the clinic staff kept coming to ask how I felt. Each time they closely examined my face, and each time they seemed to have to fight harder to keep the corners of their mouths from revealing their surprise.
Mom was finally bold enough to say what everyone was thinking. “Look at her skin!” she exclaimed in disbelief. “Her rash is disappearing.” With the ice broken, the team began to express their joy.
When the last drop of medication drained into my vein an hour and a half after the IV was hung, I felt renewed, alive for the first time in months. I wanted to go for a walk, but Dr. Franke was quick to caution us.
“You should go back to the hotel,” he told Mom. “She’ll be tired, so just let her rest.”
But I wasn’t tired. I was bursting with energy, and I was not going to waste that beautiful day. “Let’s just go for a short walk,” I begged Mom. “If it’s too much, I’ll tell you.”
Reluctantly she gave in. Anja led the way.
We walked past the Hofbräuhaus to the city square filled with café tables and tourists. We saw the glockenspiel and the massive bookstore that sold books in English. Every few steps they asked, “Aren’t you tired? Wouldn’t you like to sit and rest?”
“No,” I shouted back at them with a smile. “Let’s keep walking.” Soon they grew weary and lagged behind.
I felt as if I were seeing the world for the first time. I was charmed by the quaint narrow streets lined with buildings of varying architectural styles that all butted up against one another. There were no gardens, yet somehow beautiful flowers were everywhere. For the first time I noticed pulleys hanging above some of the windows of the upper levels of the buildings.
“Anja, why are those there?” I asked, pointing.
“These are old buildings. Their staircases are too steep and narrow for moving furniture in and out, so they use the pulleys to lift the big pieces through the window.”
We rounded a corner, and Anja stopped dead in her tracks. Her eyes took on a crestfallen expression. “This is a significant place,” she said, motioning to the nearly empty square. “This is where Hitler declared war on the Jews.” She shivered at the mention of Hitler’s name. That was the only time she ever mentioned Hitler or the war to me.
Altogether I had four days of infusions, took three days off, and then had four more. My astounding recovery continued. With each treatment we feared I might relapse, but it was a steady uphill climb. By the end of the two weeks, I was off all my medication except for the steroids, and I was being weaned off them.
We hoped for the best, but when we went to see Dr. Beals back in Michigan we prepared for the worst. Was it possible this was nothing more than a phenomenal placebo effect? Had we wanted so badly for this to be the answer that somehow my body had tricked itself into believing it was? Would I wake up tomorrow once again unable to pull myself out of bed?
Dr. Beals, being a true scientist whose hope was tempered with reason, ran a comprehensive panel of lab tests. We watched and waited, and our prayers were answered: my lupus was under control. It wasn’t in remission, but in a span of just two short weeks I had been brought back from the brink of death.
CHAPTER 20
Miraculously, by August 1994 I was healthy enough not only to go to school, but to attend boarding school. Fourteen and terrified, I moved into the dorms at Michigan Lutheran Seminary. This move had been my choice, but I wasn’t exactly happy about it.
Mom drove me to my new home on a Sunday afternoon. My life at Michigan Lutheran Seminary began just like every day thereafter would begin and end—with worship. As the pastor announced the closing hymn, I glanced down at the worship folder and saw that after the song finished the students would meet with their advisors and the parents would head home. My throat tightened. I didn’t want Mom to leave. I had changed my mind. Maybe it wouldn’t be so bad to move to Alpena.
Earlier that morning, when Mom and I attended church at Salem, Pastor Mueller had announced that Mrs. Hatzung had died. Her battle with breast cancer had ended. She had been called home to be with her Savior—a true blessing for her, but a painful loss for those of us who loved her. I couldn’t believe she was gone.
Mrs. Hatzung hadn’t just taught me; she had nurtured me. Her love, kindness, and gentleness had made it possible for me to feel safe when apart from Mom following our escape. Mrs. Hatzung had helped me break down the wall I’d built around my heart. She had even given me back Mr. Bunny. Knowing how much I missed him, she’d had her daughter replicate my lanky green friend from a photo. The new Mr. Bunny was as good as the old, and what’s more, in his absence I had been given an even better source of security that could never be taken from me—God’s Word.
It was certainly not coincidence that had placed me in Mrs. Hatzung’s care. God had always put just the right people in my life at just the right times.
The chapel swelled with the melody of hymn 332, “Go, My Children, with My Blessing.” Tears flowed silently down my cheeks as the familiar hymn took on a new meaning. I didn’t want to “go.” I wanted to cling—to Mrs. Hatzung, to Salem, and most of all to Mom, who sat beside me crying even harder than I was. Feeling responsible for her tears, I was unable to look at her.
Even as I hugged Mom good-bye after the service, neither of us could speak. Turning quickly, I left her alone in a crowd of strangers. My heart ached. We were a team. She had proven beyond a shadow of a doubt that she would never abandon me. How could I abandon her?
My guilt and sadness intensified when I learned what had happened later that day. A couple of compassionate parents invited Mom to coffee. Tears streaming down her face, she shook her head and left. After driving a few miles, she pulled into a grocery store parking lot, where she sat in her car and wept. While there, she experienced shooting pains in her stomach that she thought were manifestations of her grief. But the pains didn’t abate, and by evening she had to be admitted to Carson City Hospital. Tests revealed the severity of her health issues. She was transferred to a larger hospital and scheduled for emergency surgery.
I had promised that if I got homesick at MLS, I would return home. Under normal circumstances, my pride would have prevented me from admitting such weakness, however I was insufferably homesick. I cried every day and would have gone home in an instant if I could. But Mom’s illness took that option away. She was in the hospital hours away, fighting for her life. She had undergone extensive surgery and was being kept sedated. For weeks she remained hospitalized, which meant I was forced to stay at school.
Every day of that semester, I longed for the familiarity of home. Most nights I silently cried myself to sleep, and by Thanksgiving break when Mom recovered enough to pick me up from school I was convinced I wasn’t going back. After much deliberation, I decided I would return to school, but only to finish the semester—no longer.
Remarkably, the next few weeks changed my attitude. By Christmas I was wholeheartedly committed to staying at MLS.
It helped that I had been blessed with two wonderfully social roommates. I remained very shy, but through those roommates my circle of friends steadily expanded. I grew to love dorm life and didn’t even mind sharing a bathroom with an entire floor of girls. And to our surprise, my new independence helped repair the strain Mom and I had experienced in our relationship since she had announced we were moving to Alpena. When we were together, we appreciated the time we shared.
Everyone at MLS knew my story, but it didn’t seem to faze any of them. What they didn’t know, however, was the name I had gone by in grade school, Amanda Smith.
At my confirmation, I had officially resumed the use of my birth name. Things with my dad had been quiet for some time, and I was embarking on a new phase in my life. I wanted to move forward using my true identity, but it was an adjustment. My new classmates and teachers only knew me as Mahtob—or Maht, as my friends had begun to call me. The trouble was that sometimes I still thought of myself as Mandy.
Just days after school started, I had written letters to my grade school friends and forgotten the stamps. An announcement was made to the entire MLS student body that several letters had been found in the mail bin that morning with no postage and the name Amanda Smith on the return address. The conundrum was that there was no Amanda Smith enrolled at the school. “Could the owner of the letters please stop by the office and pay for the stamps?” Mortified, I headed to the office.
By sophomore year I was wearing my given name more gracefully, though there were moments when I slipped into old habits. Once I answered a page for “Amanda Smith” that was meant for an incoming freshman of that name. Another time my roommate picked up the Bible that sat atop a stack of books in our room and asked, “Maht, why do we have Amanda Smith’s Bible?”
It was my Bible, of course—the one I had used all through grade school. Its binding was torn and taped, its cover tattered, its pages soiled along the edges from years of study. Its text was littered with my underlines, my notes decorated its margins, an
d the pages naturally flipped open to my most commonly referenced readings. This book, now filled with the lessons that shaped my character, had helped me to feel safe after our escape. Inside its front cover, in surprisingly petite letters, Mom had printed, “Mandy Smith.”
The summer of 1996 brought the world to Atlanta, Georgia, for the centennial Olympic Games. Mom and I attended at the invitation of a Belgian parliamentarian named Anne-Marie Lizin. Ms. Lizin was active in a women’s rights organization called Atlanta Plus, which was protesting the Muslim world’s exclusion of women from the Olympic Games. Chief among the offenders was Iran, who forbade women from participating in any event that didn’t permit them to remain fully covered in hijab. Atlanta Plus took the stance that any nation that didn’t allow women to participate as freely as men in the Olympics should be banned from the games altogether.
Mom and I are not anti-Muslim or anti-Iranian. We are, however, pro-freedom, so we accepted the invitation. In Atlanta we joined forces with prominent women from Belgium, France, Germany, Sweden, and other countries. We marched down the street in matching T-shirts, carrying banners and chanting feminist slogans. I had been snapping pictures as we went, but when the police gathered I put the camera down. Anne-Marie Lizin encouraged me to continue taking pictures. “You’re the youngest one here,” she reasoned. “The police won’t bother you. You can be our official photographer.”
Having lived in a society where the free expression of ideas was forbidden, I found it exhilarating to exercise my right to free speech in such an overt way. We marched, chanted, and waved our banners—and I took pictures—as the police watched. To me it was a display of democracy at its finest.
My Name Is Mahtob Page 15