“Happy families are all alike; every unhappy family is unhappy in its own way.” – Tolstoy, Anna Karenina
I probably need the debriefing more than you need the update. Many things were laid to rest last week, but my brother was not one of them. I did say goodbye, but not for forever. The cause of my brother’s coma was reversible—due to toxins that built up in his body as a consequence of liver disease. His ammonia level was higher than his doctor had ever seen in decades of practice. His coma was deeper and longer than the ones that we realistically hope people can wake from, and his was also in the setting of septic shock, massive blood loss from intestinal veins, and acute respiratory failure from a life-threatening infection. We were called to say goodbye.
So we gathered there together—siblings and half-siblings, parents and step-parents, spouses and exes. Of the ten other members of my brother’s immediate family present, I only had three of their phone numbers in my cell phone—my sister and my parents. Of the eleven of us crying around his bed, not one of us knew about his chronic disease before that dreaded phone call. Happy families are all alike—but my family is like no other.
I’ll explain the relationships as well as I can. My father was first married to my brothers’ mother—together they had three sons. After their divorce, my father married a fellow drug addict, and they would literally lock my brothers out of the house to get high. That marriage dissolved quickly, and my father married my mother (who had her own son from a previous marriage)—and together they had me and my sister. Meanwhile, my father’s first wife remarried (and later divorced) a man who was a good father to her sons. For whatever reason, my dad had a significant share of the custody of his sons, despite his history of addiction. They were with us often when I was younger, and we were often unsupervised—the youngest is ten years older than I am.
My brothers knew pain that I did not know, and it affected them; thus, it affected me. They were hurt deeply, and then they hurt me—one more than the other two. What must have happened to them that they would hate their father’s daughter? What evil had the youngest known that he would cause me harm and call it love? What was wrong with me if I preferred the pain to the silence? Not one of them came to my wedding or even RSVP’d with regrets. Not one of them called to congratulate me when I gave birth to their first niece. Not one birthday phone call or one “I love you” from any of these three—my whole life long. I can count on my fingers the number of times I’ve seen them in the past eighteen years, and I’ve been trying to replace them the entire time. Yet here we were all together in a room with our father—and our mothers, and their ex-step-father. Their wives were there, too. My brother who was facing death had recently divorced—so his ex-wife joined us as well. They never had children. Halves, steps, and exes—unhappy in our own way.
But all unhappy together, for the first time ever.
When we arrived at our hotel on the west coast, it was too early to check in. We sat with our bags at a table, waiting for the youngest of my dad’s sons to arrive with his mother. They had been at my ill brother’s hotel trying to gather his belongings and trace his steps leading up to hospitalization. They were a block and a half away, but they struggled to navigate the unfamiliar city. What should have been a five-minute journey to us took more than an hour, despite texted locations and dropped pins and exasperated phone calls. When my brother and my dad’s first wife finally arrived, it was easy to see why. They were broken, with red faces and swollen eyes—even walking was too much to ask. I was moved by their vulnerability, and it seemed natural to embrace a brother who betrayed my trust many years ago and the woman my father was once married to. That day, we were all the same.
We discussed what we knew so far. My brother had flown to this city two days before on business and checked into the hospital, short of breath but stable. The next morning, he was found in his room in a coma and struggling to breathe—and he was emergently intubated. He had stayed at this hospital prior to his divorce and given his wife’s number as an emergency contact—so the hospital called her when they found him obtunded, and she called the family. The youngest of my dad’s three sons and their mother arrived first and went straight to the hospital. In my brother’s belongings bag, they found a hotel key and went straight to the hotel to find answers about what events led up to my brother’s decline in health. They went to the front desk and gave my brother’s name, asking if the receptionists knew anything. They were met with shocked expressions—“That guest checked in at this desk, then disappeared two days ago while we delivered his bags to his room at his request. He left his wallet on the lobby floor, and an Uber driver returned his phone hours later. We’ve been worried about him ever since. He looked terribly ill.”
The hospital had given us more details—he had been hospitalized there before and was told he had a cirrhotic liver four months before. He had actually quit drinking nine months before on his own, worried about the fact that he couldn’t write without a drink and refusing to be dependent on anything other than his own genius. But the damage had been done. He would need a new liver, and until he got it, he would have to deal with the complications of the one he destroyed.
We had some answers as we sat around a table, a most unlikely family—but we had many more questions. Does he have a living will? Life insurance? Health insurance? Who has his dog? When are his bills due? Should we call his employer?
Other questions were specifically for me. J, is this survivable? What will he be like if he wakes up? Can a bad liver really cause a coma? Potentially, I don’t know, and Yes. My answers were worthless, but they were enough for my brother’s mother. “J, will you be medical power of attorney? He didn’t name anyone, and I don’t trust myself to know what to do.” I wanted to argue since she was his mother, but I knew it made sense. Although I couldn’t officially hold “Medical Power of Attorney” without my brother having named me prior to becoming incapacitated, I could make medical decisions on his behalf if his parents delegated that responsibility to me. My brother’s providers could be more efficient if they communicated with me, allowing me to interpret their findings and decisions in words my family could understand. “Yes,” I finally answered. I hoped that if the time came for compassionate withdrawal of life support, I could help her understand and agree to it.
I did not wish to advertise my medical knowledge. I know how threatened a medical team can feel here in Texas when the sibling from California suddenly flies in to run things. We literally joke about that at our hospital—“the sibling from California.” And here I was in California—the sibling from Texas who flew in as medical decision-maker. At least they don’t have to know that I’m in the medical field and wonder if I’m there to suggest better ways to do things. My subtlety lasted five seconds. “Who’s our medical decision-maker?” the neurologist asked when we arrived at the hospital room. “I am,” I said. “I’m his sister.” “She’s a doctor,” added my brother’s mother.
“I’m a fourth year medical student,” I clarified. “How is my brother?” He took me into the room alone, and I was glad we had caught him while he was there. “I can spin this in a hopeful way—because we can always find reason to hope—or I can spin this in a realistic way. Which do you prefer?” “I want your expert opinion,” I said—understanding the implication that the realistic interpretation was hopeless. “You’re speaking more like a medical student than a sister,” he answered. I shrugged. I hadn’t ever been much of a sister. He examined my brother and then explained his condition in many words, likely dumbed down to a fourth year medical student’s level. I understood every one of them, but one sentence stood out. “I don’t think he’ll ever wake up.” He elaborated, “In fact, with this requirement of pressor support, I’m not sure he’ll make it until the rest of the family can arrive to discuss withdrawing care. If anyone wants to see him alive, they need to get here today.”
I was honest with the family about what the doctor had said, and I made a phone call to another brother I hadn’t spoken to since my childhood. Suddenly everyone was willing to pick up the phone. We spoke for thirty minutes, and he booked his flight, understanding the seriousness of his brother’s condition. When I returned to the room, my dad and his ex-wife were collapsed into chairs that had been pulled up to the bedside. My dad looked pale and sat quietly. My brothers’ mother looked frantic, and she rocked back and forth saying “I don’t know what to do” over and over again. These hours were the worst, and I spent most of them answering questions. What are pressors? What is anoxic brain injury? What does it mean to have high ammonia levels? I was thankful for the distraction.
Late in the day, another doctor came in with a different perspective. She wasn’t certain that my brother had gone long enough without oxygen to his brain to cause such a profound coma. She had never seen an ammonia level this high, but she had seen plenty of patients with liver disease wake from comas this deep once the toxins were removed from the body with medication. She wanted to give him more time before she lost hope. “I think this is reversible,” she offered, “so don’t give up yet.”
Hours and days passed. I kept the extended family updated via text message. I translated the doctors’ and nurses’ reports to the immediate family in the hospital room and waiting room several times each day. I asked questions of the doctors that no one in the family knew to ask. My purpose was not to interfere with my brother’s excellent medical care, but to explain his condition and the care he received to the people who loved him the most. The pathology behind his condition was complicated and multifactorial, and I would have been completely lost four years ago. My brother had never given me the opportunity to love him. He had never needed anything from me, until now. I felt useful as I served his family. My family. Our family.
The ammonia level eventually dropped. After over 48 hours of deep coma without any medically-induced sedation, my brother began moving enough to require sedatives so that he wouldn’t remove his breathing tube. In brief intervals of less sedation, he would sometimes even respond to commands. He opened his eyes; he squeezed my hand. We were hopeful. After 72 hours, his critical care doctor told me that she wanted to try to wake him up the following day and do a trial to see how he could do on his own if his ventilator settings were reduced to allow him to do the work of breathing. I couldn’t believe it—I had come to say goodbye, and to consent to removal of that ventilator support so my brother could die. Now they were talking about removing it so he could breathe on his own.
Later that afternoon, I was told that my brother was being transferred to a more specialized facility with a liver transplant center as soon as a bed became available. I asked if extubation (removing the breathing tube) would still be a possibility before transfer, and the nurse told me that it wouldn’t. “Your doctor is crazy—he won’t survive that,” he said. The afternoon and evening were also complicated by a GI bleed with an unidentifiable source, and I understood the reality that my brother could decompensate at any moment.
I decided to stay the night at the hospital in case the transfer happened in the middle of the night. I wanted to be there to offer any missing information at the new facility and meet the team. The rest of the family left at around 5:30 to get food and rest. At 8 pm, the food I had ordered arrived, and I ate it in the cafeteria while I called my husband. At just before nine, my youngest brother texted me to let me know that he and my other brother and their wives and mother were coming to say goodnight to my older brother. He wanted to see if I needed anything for my night at the hospital. I told him I was fine and that I would let him know if we were transferred overnight. Before they left the hospital, my brothers found me in the cafeteria. “You look tired,” the youngest said as he knelt in front of me and took my hand. “I love you so much. You’ve been amazing, and I don’t know what we’d do without you. Is there anything I can do for you?” he asked.
It would have been too much for me even at my peak of energy and health and rest. But that night I was too tired, too afraid, too vulnerable—I couldn’t hold myself together. “That’s all I need,” I said. “Just love me.” And I cried in my brother’s arms for the first time ever. His wife embraced me next, followed by my other brother. “I love you, little sister,” he said for the first time, “and I’m so glad you’re here.” More embraces and words of gratitude and love came from his wife and my brothers’ mother, and I laughed after they left about the fact that I had just told my dad’s ex-wife that I loved her—and meant it. This tragedy had brought my family together over shared grief, shared hope, shared fear, shared meals, and shared spaces. My first real experience of my brothers’ love gave me energy for a long night ahead.
It was indeed a long night. A bed opened up at the more specialized facility, so my brother had a room. “A bed opened up” is a euphemism for “Someone died,” and that harsh reality was never out of my mind throughout the transfer. I was glad I had stayed despite my parents’ insistence that I sleep and let the transfer happen without me if it was going to happen at all—it involved a great deal of paperwork, and the nurses told me they would have called me in anyway if I hadn’t been there. I signed my brother out at a little after 1 am and took an Uber to the hospital, hoping to beat the ambulance there.
I did beat the ambulance there by more than an hour, and I ended up making small talk with a bipolar woman in a manic episode—the only other person in the lobby at that hour. Anything to keep me awake. She didn’t seem to need sleep, and after she wandered around the lobby taking deep breaths and commenting about the oxygen level at various parts of the large room, I began to wonder if she was a locked unit escapee. My heart went out to her—she was broken and didn’t even know it…like so many of us.
Two hours after my arrival, I was able to see my brother. Nurses were asking for a medical history I couldn’t provide—he had lied about his health, and I knew very little. I did provide our family history and the course of his stay at the facility we came from. I did confirm that he had not traveled to West Africa in the past three weeks or had contact with anyone suspected or confirmed to have Ebola. They checked his hemoglobin, which showed that his bleeding had not progressed, and they told me to be back by 9:00 am to see the hepatologist. I crawled into bed at 4:15 after a text message to the family giving the details of our new location and telling them that I would be at the hospital by 9:00.
When I arrived the next morning, the hepatologist wasn’t there, but a respiratory therapist was. They disagreed with the nurse from the other hospital and were planning to attempt to remove my brother’s breathing tube. “We’ve been weaning his sedation and we’re starting a breathing trial, but no response yet,” she said, and then asked, “Who are you?” As I introduced myself to his nurse, my brother’s eyes flew open. He looked terrified, as if he knew that my presence meant that something had gone terribly wrong. I asked if he could hear me, and he nodded. I asked if he knew where he was, and he shook his head. I asked if he remembered getting on a plane on Monday, and he shook his head. I asked if he remembered planning a trip for work, and he nodded. We had a starting point, and from there I walked him through the events as we had pieced them together from the time he got off the plane until that moment, pausing often to check for his understanding. He was still intubated and unable to speak, but his face spoke volumes. I had never seen my brother cry before, but he cried that day. “Are you overwhelmed?” I asked. He nodded. “Do you want me to stop talking?” He shook his head. “Do you want to know more about what made you sick?” He nodded. I told him everything, in words that he could understand—and I knew that he would not likely remember anything I told him in the shadows of sedation. “We all know about your liver now—you don’t have to hide it anymore. We love you, and we’re going to help you get through this.” He shook his head and cried again. I ran through the list of who was with us in the city—all of the immediate family members except my sister, who had left a few days before, as well as his ex-wife and his best friend. I asked if he wanted to see one of our brothers, and he nodded. I texted him, realizing that no one else in the family downstairs even knew he was awake and breathing well with his ventilator all but turned off. I knew it wasn’t time yet for his mother to see him, but he was closer to his brother than to anyone else, and I wanted him to have that support in the moments to come. My brothers were reunited, with tears mingling on tightly clasped hands. As brothers do, they quickly overcame their tears with humor. “We’re glad to have you back, Mr. President,” my healthy brother said. “The country has been waiting for you.” I played along when I saw my brother’s smile—“Your children would like to see you. Should we bring them in?” His tubed smile broadened at our teasing. He was back.
The respiratory therapist asked us to step out for a moment—they needed to move some equipment around the room in preparation for extubation, and they needed room around the bed to do it. As we walked out of my brother’s room and into the hallway, my other brother pulled me to his chest and sobbed. After what seemed like minutes, he finally said “He smiled, J.”
The respiratory therapist invited us back into the room. “We’re ready to extubate,” she said—“just waiting on the doctor’s orders.” I asked my brother if he wanted his mom to come in, and he shook his head. I didn’t dare ask if he wanted our dad. I moved on and asked if he wanted his best friend, and he nodded. His friend joined us, and the three of us were at bedside in awe of my brother’s smile when the extubation orders came in and a team of nurses filled the room. We stepped out, and the curtain was drawn—a two-inch gap left in the center.
This was the moment we had come for. On Tuesday, we were told that we might soon need to make a decision as a family about when to remove my brother’s breathing tube—so he could die. Just days before, he hadn’t had brainstem reflexes—much less a smile. Extubation was supposed to be the ultimate defeat—and here it was the greatest victory I’ve ever been a part of.
I watched through my gap in the curtain through flooding eyes. I had seen this done too many times to count—and it had never made me weep. Within seconds, the tube was out; he was suctioned; he was cleaned. He was fine. I collapsed into my brother’s arms in the hallway, and he wept too. Our brother was alive and communicating. Our family was alive and communicating.
We were invited back into the room, now cleared except one nurse. My brother’s first words were profound: “That sucked.” His second words shocked me. “Mom and Dad.” Surely not. “Your step-dad?” I asked. He shook his head. “Mom and Dad.” I still couldn’t believe it. “Your mom and our dad?” I specified, not wanting to bring his worst enemy into the room uninvited. He nodded. “Mom and Dad. Have they been good?”
We assured him that they had been perfect, and it wasn’t a lie at all. My dad and his ex-wife had supported each other gracefully during the deepest heartache either of them had ever known. The whole family had. For this week, my brothers had been what brothers should be, and their wives had been like sisters. For this week, my mother had taken it upon herself to serve and uplift her husband’s ex-wife—she could imagine the pain of losing a child, and she sought to lessen that pain for the least likely friend. My mom provided every meal for my brother’s mother, ordered every Uber ride, went on every errand for an incidental forgotten item. My mom even took her shopping for warmer clothes (she had barely packed at all, and what she packed was for Texas summers), kept her phone charged, and gave her a shoulder to cry on whenever she needed it. I have never loved my mother more. My brother’s mother also had the support of her second ex-husband, the step-dad who was deeply involved in my brothers’ lives. It seemed that they forgot they were divorced—they have both remained single for decades, and I caught them kissing one night after dinner. Even my brother’s ex-wife was included as part of the family. We all knew that a painful divorce probably left them with regrets and a need for closure. She knew him better than any of us after eighteen years of marriage—even though she still didn’t really know him. We honored her desire to be present and to have another chance to say goodbye to him after she thought she had lost that chance forever. She was not the ultimate enemy of the family anyway—my dad was. But you never would have guessed it. I watched my brothers seek out my dad time and time again during these dark days. I watched the embraces and confessions of love and the formulation of plans for the future. I watched walls crumble.
So yes, dear brother—they’ve been good. We’ve all been good.
My brother’s mom and our dad came up to see him—my other brother and I stood in the corner, arms linked. I watched my brother cry as he took our dad’s hand. “You look good, Dad,” he said hoarsely. “I love you.” His mom turned to my brother and me, shocked and ecstatic. She has always wanted her boys to have a relationship with their dad, but she told me later she hadn’t thought her son would even ask for his father. I could tell that my dad was overwhelmed—he is rarely a man of few words. “I love you too, son. I know everything, and I love you anyway.” My brother shut his eyes. “I’m a mess. I need you.” “I’m here,” my dad assured him.
He later asked for his step-father and our other brother. Then he needed rest, and he recommended an Italian restaurant for lunch. We went there while he slept, our appetites suddenly returning in full force. When we returned, he awoke and asked for both of my parents. “I haven’t let you be a big part of my past,” he began, “but you’ll be a part of my future.”
He saw his brothers again with their wives, and he finally asked for his ex-wife. When she returned from his bedside, she wore a content and relieved smile. “That went well,” she whispered to me later. “We have closure.”
That night, we had another large family dinner with our family of halves, steps, and exes. Before the margaritas even arrived, my brother nudged me and pointed across the table. My mother and his mother were taking a “selfie” together. Our dad and his step-dad took the cue and leaned in for their own selfie. Two women once married to the same man. Two men once married to the same woman. Friends, bound by their mutual love of one hurting person. One of my brothers popped his head into the camera field behind our dad and his step-dad. Next to my dad, and smiling. My brother kissed my cheek and whispered in my ear, “Did we just get our family back?”
Yes, we did—and that’s the miracle I’m stuck on. My brother was all but dead, and he came back to life. And my family was all but dead—and now it lives, too. Do you remember my sadness in my post about saying goodbye—do you remember the facebook message devoid of the words I longed to hear? All three of these brothers told me they loved me this week. All three made a promise to never walk out of my life again. I have spoken to at least one of them every day since I returned home, and every conversation ends with those precious words. All of my siblings are coming to my parents’ house in a few weekends, just to be a family for two nights. That hasn’t happened since I was too young to remember. Life stirs where I thought it was lost.
And my dormant heart stirs and awakens to life. What heartache have I known? Betrayal by one brother, and rejection by others. The lies of my father. The distance of a God I longed for. All of these…redeemed. I am struggling to find the words I need here. None of you could possibly understand what happened in my heart—it exceeds my talents and vocabulary, as well as your attention span. To put it simply, I found safety and comfort in the arms I once feared, and each of my brothers affirmed their love for me. The lies of my dying brother were no different than the lies of my father—none of us knew what he struggled with. When the truth came out, we all survived. My brother leaned on my dad, knowing that he’s been through shame like this before. I found peace in my prayers and in the prayers others offered, even in the darkest of moments. I felt that God was near and that this tragedy was for his glory and our good.
I know that there are medical explanations for my brother’s recovery. I know that there are psychological and sociological and hormonal explanations for what happened in my family. I know that this story does not need Jesus.
But I know that I do.
Maybe it’s because my personality type is ENFJ. Maybe it’s because this is a coping mechanism for a tragedy. Maybe Jesus is a lie. But my life has been marked by lies, and this feels different. Lies from my brothers, lies from my dad, lies to my family about where I stand in belief. I’ve known so many lies that I struggle to identify truth, and I will never claim with certainty to hold it. But if there’s one thing I do know, it’s this:
Me without Jesus is the greatest lie of all—and I’m finished with it.