Salaam, Love

by Ayesha Mattu

I sat in front of the blue fountain at the main entrance of Stanford Medical Center, distilling everything that had just happened. I was dreading the call to my wife. I thought about breaking the news when I got home, but one look at my face and Heidi would know everything. What would she say? What could she say? We’d known each other for eighteen years now: married for the past fifteen, parents for the past five. I was building up the nerve to call her, just like the time I’d rehearsed the lines in my head to pump myself up to call her from a payphone in the basement of the UT campus tower.

  “Hey, Heidi. Man, I’m so wired on all that coffee and studying. I had to call you to relax.” No, too cheesy.

  How about, “I’m getting a study group together. You’re welcome to join.” She’d know it was a lie.

  My bride, with whom I exchanged rings at the footsteps of the pyramids, honeymooned in Italy, and returned to Europe, year after year, walking its cobblestone streets and admiring its beauty, would be scared to death of losing her husband and the father of her children.

  “Hi. It’s me.” Just me, I thought, the real me—without rehearsal.

  “Hi, Mohammed. What did the doctor say? Did he order the DNA test?” I could hear our children playing in the background. She was anxious to hear good news, news that everything was fine, that Kareem and Leila would be fine as they waited for me to return.

  “I have it. He showed me the MRI and I saw it.”

  The it was the pear-shaped scar tissue in the middle of my heart. It was echoing the involuntary beat signal as it passed through the muscle. It was the cause of my father’s death. Like the religion he had tried to instill into my identity, this was his gift to me.

  “Are you sure? Isn’t the DNA test more accurate?” She was good at scrutinizing. It’s one of her traits that I love. It’s also how she survived the PhD program in Egyptian art and archaeology at Cal.

  “He said he didn’t need to see a test. It was right there on the screen.”

  “But what about the other cardiologists?”

  “He said they misdiagnosed me. They only see patients with hypertrophic cardiomyopathy once or twice a year. Dr. Knowles said he sees three to five patients each week.”

  “So does this mean you need a defibrillator, like your brother?”

  “Yes.”

  “When is the surgery?”

  “I have to meet with the surgeon first. And the genetics counselor also wants to meet us.”

  “So, how do you feel about everything?”

  “I’m scared, but only about having the surgery. I’m optimistic about the defibrillator.”

  “Why?”

  “Because Dr. Knowles said it will listen to my heart and save me in the event of a heart attack. It will give me a 98 percent chance at a normal life.”

  “What is a normal life?”

  “A life where I get to die at a ripe old age, like everybody else.” I could tell she wasn’t convinced—no alhamdulillah. I wasn’t convinced yet either. I didn’t really know what a normal life was, but I didn’t want to show it.

  I’ve had my implantable cardioverter-defibrillator for almost six months now. When necessary, my cardiologist can read my every heartbeat from the moment he fired it up inside me—my “rebirth.” He tells me not to obsess about it, but I hear the echoes of my life like the very graphs printed before the doctor. I sing atop the peaks, roar in the valleys, and weep in the caves I’ve created along the way. Family dance time on Friday nights or Sunday mornings helps me forget about my midlife crisis. As my five-year-old son, Kareem, mimics Heidi’s crazy hipline moves, I spin my daughter, Leila, round and around until we collapse together, dizzy with laughter. Then the world stops spinning, and I catch my breath.

  Becoming Family

  By Randy Nasson

  If you don’t try to fly,

  And so break yourself apart,

  You will be broken open by death,

  When it’s too late for all you could become.

  —Jalāl ad-Dīn Muhammad Rūmī

  Sitting in uncomfortable silence on our fire escape, she turned to look at me as I exhaled. The smoke clouded the air between us. I was not going to speak first. I almost never do, especially when I am in the wrong.

  “Do you love me, Randy?”

  This wasn’t the “I’m just asking because I want to hear you say it” variety that warrants an affectionate “Of course I do,” followed with a hug and a kiss. No, this time, she really wanted to know. She needed to know because she didn’t know.

  “Yes.”

  “Are you sure?”

  That stung, but I could hardly blame her. “Yes.”

  “Do you still want to be in this marriage?” she asked. “If you don’t, then be honest and we can have that discussion.”

  It would’ve been easier to run. I don’t deny that I was tempted. I was caught in a lie and my guilt was festering into cowardice. I could take the out she offered me, move back to Boston, and resume my life minus the accountability of being a husband. That would have been the easy choice. Yet, I knew it was the wrong one.

  “I do want to be in this marriage. I want to make this work.”

  Sitting fearful and fragile, I retreated to one of my favorite memories from our courtship the previous year. It was October 2001, a month after we’d met. Ayesha was visiting friends in San Francisco and asked if I wanted to join her for the city’s annual Halloween party. I held her in my arms as the revelers in the Castro dissolved into a blur of color and muffled voices, a pulsing kaleidoscope with her eyes fixed at the center. Those eyes that said “I love you” even though her lips had yet to; that gazed longingly into mine on the beach in Mendocino later that weekend; that said “yes” to my spontaneous marriage proposal two months later.

  Those were heady days. I was completely in love, unguarded and fearless.

  That was fifteen months ago, before we married and moved from Boston to San Francisco in search of a new life together. Before the lack of community exposed how fragile a new relationship can be. Before I let her down.

  The distinct advantage to getting married young, or to not having premarital relationships: you carry no baggage to pollute your marriage. You have a clean slate. I did not. I lied about something I should have been honest about. When Ayesha found out, she was furious and devastated. I didn’t know if I could regain her trust, but I loved her too much not to try.

  I knew that I wanted to make things right. What I didn’t know was that the journey to reconciliation would require radical transformation. Flowers, romantic getaways, and nights out dancing—none of these was going to work.

  To redefine us, I had to start by redefining myself.

  A few weeks later, Ayesha once again turned to look at me, this time across the admitting room at Saint Francis Hospital, where she sat in a wheelchair, inexplicably unable to walk or stand. Her eyes said, “I’m scared and alone because I have nobody here but you and I don’t know if I can trust you.” As they wheeled her away to an examination room, I was sent to fetch her personal items: a toothbrush, pajamas, a change of clothes.

  When I awoke that morning, I’d turned over and seen her trying to hold herself up against the wall, struggling to make her way across the room. When it was clear that this wasn’t merely a case of her leg or foot being asleep, we quickly made our way to a nearby doctor’s office. After an expedited examination, the doctor arranged for an emergency admission.

  He suspected Guillain-Barré syndrome, a rare, mysterious paralysis. We had to get her to the ICU to start treatment before things got worse.

  After gathering Ayesha’s belongings at our apartment, I sat stunned, holding the phone to my ear. When my mother said, “Hello” in her usual happy and inviting voice, I couldn’t speak.

  “Hello?” she repeated.

  “Hi, Mom.”

  Those were the only words I could muster before I began sobbing uncontrollably. I don’t know why I made the call from the bathroom; perhaps it felt safer, cleaner, with ne
arby water, towels, and Band-Aids. I tried to pull myself together while Mom called my name tenderly.

  “Randy? Honey what’s wrong? Are you okay?”

  I just wanted to fall to the floor. I wanted my mother there to hold me and tell me everything was going to be all right.

  “It’s Ayesha,” I said. “She’s in the hospital. . . . She can’t walk. . . . I don’t know what’s happening.”

  “In sickness and in health . . .” I had heard that phrase so many times; the “old-age clause” in the marriage vow.

  Not that I recall any specific vows—other than my affirmation that I agreed to be her husband. It was all such a blur. I was utterly bewildered, having landed in Pakistan the day before, attended our mehndi that night, and then come to her family’s house for the official marriage ceremony the next morning.

  Remembering our wedding the year before, I sat there feeling helpless in her hospital room. I didn’t know how to support her in her time of need.

  The door opened and her father walked in with a warm and soothing smile. For the first time in days, she expressed sincere relief because someone had finally arrived on whom she could rely.

  I was her husband, but I wasn’t family.

  Family is not created through blood ties or marital contracts. Family is an exchange of intimacy, trust, sympathy, counsel, and caregiving that connects our souls.

  For years I kept my own family at arm’s length in pursuit of a fierce independence from intrusion, concern, guilt, or anything that would complicate my pursuit of self-indulgence. I was always looking for a good opportunity or a good time, and if you didn’t want to come along with me that was fine as long as you didn’t stand in my way.

  That’s not to say that I never forged any meaningful relationships. But looking back, I recognize that when the people closest to me were in need, I wasn’t able to fully listen or be present because I was self-consumed, worried about how I was being impacted or busily formulating a response instead of focusing on the other person.

  Over the next few weeks, Ayesha recovered, though we never received a firm diagnosis. A victory, but still shallow and incomplete, like my resolution to be a better husband.

  Later that summer, we moved to a more spacious apartment that was closer to her office. But a new address can’t help you escape your problems when your problems are within yourself, and forgetting the past—which isn’t really possible—does not heal a wounded heart.

  By the time my father came to visit, later that fall, I was deeply depressed. A few rounds of marital counseling had helped us diffuse the fighting and afforded civil discourse, but our communication remained sparse. I wallowed in private misery, wondering if my future would consist of unending dutiful days. Despite my sincere repentance, things weren’t better. Trust takes years to rebuild.

  One evening during his stay, Dad and I went out together. I had never talked with him about what was going on between Ayesha and me. But I laid it all out on the table: the transgression, stress, counseling, the near-divorce. I needed advice badly. What I got instead was a stunning reflection.

  He responded with some accounts of his own marital issues, complained for a bit about his wife, and talked in abstract clichés about the challenges of dealing with women and marriage. Instead of engaging me about my situation, he vented about his problems. I was briefly infuriated, ready to lash out, when it hit me.

  “This is what she experiences when we talk,” I realized. When she reached out to me, I remained too consumed with my own sadness and confusion to listen, to be present, or to offer comfort.

  My insight was painful. Not only had I been deaf for the duration of our relationship, but it became clear that I had been so throughout my adult life.

  I shared my epiphany with Ayesha, but it took several months of faithful attentiveness before her skepticism began to give way.

  Mendocino had always been a favorite romantic getaway of ours: the salt-worn clapboard siding on the mid-nineteenth-century homes that were now bed-and-breakfasts, the rhythmic lapping of the ocean against the shoreline, the quaint shops and the cozy rooms with private fireplaces and hot tubs. Soon after my realization and subsequent resolve to be a better listener, we spent the entire weekend in a secluded cabin, happy to be alone together, talking about our future and wishing we could live in Mendocino forever.

  When she spoke, she had my full attention. It wasn’t easy at first, but I continued to make the effort of tuning into her words and feelings. I was ready to be a better husband, and for the first time, I was ready to listen, sympathize, and act on her behalf.

  A few months later, lying in bed one morning, Ayesha turned to me.

  “Randy?”

  “Yes, babe?” She looked lovely as the early light fell on her face. But the look in her eyes told me something was wrong.

  “I can’t feel my feet.”

  Repairing our marriage was one thing. Our real trial was about to begin.

  I sat on the floor of our bedroom exhausted, saddened, and enraged. Behind me she lay on her side moaning in pain. She had been in great pain all evening, her spinal cord inflamed in the area near where she had had previous exacerbations. This was shaping up to be the fourth or fifth one since her first hospitalization two years prior, and I couldn’t bear it.

  I closed my eyes and envisioned myself throwing rocks at the sky, cursing God for afflicting her with this much suffering. Convinced that God wasn’t caring for her, I knew it was entirely up to me.

  In the summer of 2005, her neurologist prescribed weekly interferon injections—a common treatment for patients with her initial diagnosis of multiple sclerosis.

  “I’ll bring you an orange and a syringe so you can practice,” said the nurse.

  Ayesha fanned her face rapidly, nervously. All I could do was chuckle and say, “I’ll do it.”

  “You will? You’ll give me a shot every week? Oh my God . . . ” Her incredulous expression was priceless. More fanning.

  Unfortunately, the shots didn’t help and she suffered yet another exacerbation soon thereafter. Her close friend Erin Googled Ayesha’s symptoms and came across a reference to a rare condition: Devic’s disease. Ayesha’s neurologist responded skeptically but referred us to the head of neurology at UCSF. “The god of neurology,” he was one of the few specialists in the country who had experience with the disease.

  Although this was great news, I was terrified of what he might tell us. Devic’s—also known as neuromyelitis optica (NMO)—is a horrible disease, attacking the spinal and optic nerves and debilitating the patient through paralysis and blindness. At the time of our visit, patients rarely survived more than eight years after their first onset. It was now August 2005, almost three years after Ayesha’s first onset. If indeed she had Devic’s, the odds were that she would be dead within the next five years.

  The specialist told us that the Mayo Clinic had developed a blood test that could conclusively determine if a patient had Devic’s. Ayesha’s test came back positive.

  Death was no longer a remote possibility; it was inevitable. I began emotionally bracing for it; wondering when and how it would happen, envisioning the ceremonial bathing of her body and the burial, imagining the void that would devour my soul in her absence.

  Staving off Devic’s was a losing proposition. It was only a matter of time until inflammations and lesions occurred in the upper spinal region—the region that controls critical bodily functions like breathing—and then we would start having conversations about life support and living wills.

  And thus began my emotional metamorphosis. The husband and lover receded as the comforter and caregiver emerged. Being in love with Ayesha with that fiery newlywed passion seemed unimaginable, because that aspect of love is largely self-serving and self-pleasing. I needed to dedicate the entirety of my emotional reserves to supporting her through a series of progressively aggressive exacerbations and medical procedures that were often frightening and occasionally dangerous.

 
Instead of dinners, parties, or dancing, our late nights in the city were spent lying side by side in a hospital bed. Sometimes we watched a movie on my laptop, but most often we talked as I massaged her legs while encouraging her to push and pull her feet, rebuilding muscle and regaining strength following bouts of paralysis. I’d bring in decent food to break the monotony of hospital cuisine. These were days of great tenderness; being cooped up in hospital rooms afforded us the time and opportunity to deepen our relationship and truly become family.

  One of my favorite activities was reading aloud to her while she rested. We were partway through The Lord of the Rings when we learned about a clinical trial for Devic’s patients. After a year in which she was hospitalized half a dozen times and her exacerbations appeared to be increasing in ferocity, we were ready to try anything.

  We had the incredible fortune to live less than two miles from one of only two places in the world the clinical trial was being offered. Although not everyone responded positively to the treatment, during the two-year study, Ayesha had no exacerbations. This was nothing short of a miracle.

  After the trial, we continued the annual treatment schedule. Our only hospital visits were for routine blood tests and protocol follow-ups. I used to think it was trite when people said things like, “At least you have your health.” Not anymore.

  With minimal exception, the next four years went smoothly, and the specter of death slowly receded. Ayesha was better, I started a new job, our finances stabilized, and we began to live again. It was a relief not to wonder when the next attack was coming. While she wasn’t cured, a few years of sustained health earned my faith in the treatment.

  The next few years were our happiest yet: we resumed our long walks across town along random streets just to see where they went; we dined out; were plugged into a thriving, diverse Muslim social scene; and made regular trips up to Lake Tahoe. For all intents and purposes, this was our real honeymoon period, years after we first got married.

  Which is why, in January 2008, when Ayesha broached the subject of trying to have a child, my immediate response was a mixture of shock and incredulity.