Hundreds of Interlaced Fingers

by Vanessa Grubbs, M. D.

  “Let’s do it,” he said. And shortly thereafter, he was taken to the operating room.

  Robert woke to two tubes coming out of his penis. A stitch attached a new narrow plastic catheter to the slighter larger one he went into surgery with. While he slept under general anesthesia, the urologists had gone through his penis with a rigid cystoscope, a hollowed-out metal rod slightly larger than a regular number-two pencil and configured with a light and camera that allowed them to pass surgical instruments through it and to see inside his bladder and ureter. What they found was a ureter in a tight Z formation, urine leaking at the second turn where my ureter was stitched to his. They were able to thread the new catheter around these sharp turns. All that Robert could see was the end of the new catheter with thin black lines around it. He was told that if he saw four of these lines, he was to push the catheter back in so the whole thing wouldn’t fall out. This strange jerry-rigged contraption didn’t seem like much of a fix, but Robert tried to be hopeful that the problem was indeed fixed since at least urine was coming out again.

  However, a day later, the afternoon of the fourth day after transplant surgery, the swelling began to worsen. His hope waned. In hope’s place, suspicion took hold. Was there something they weren’t telling him? Why couldn’t he see his chart?

  With an IV pole supporting his urine bag connected to his penis tubing, he walked to my room, where I lay in bed twice as long as most donors. Though I had been walking around too, my bowels had yet to wake up after the anesthesia—and you aren’t allowed to leave the hospital until you can pass gas.

  Robert stood just inside the door trying hard to smile, trying to hold true to his stoic linebacker type of man reputation, but I could see the hurt in his eyes. As he stepped into the room, his eyes shifted to his mother, Ginger, who had come to sit with me after visiting with him.

  Ginger sat in the room’s recliner, her back straight and her legs crossed at the ankles like a proper lady. She was a petite woman with fair skin and wavy short hair. She didn’t look like she could have given birth to two sons who would grow up to be over six feet tall and 220-plus pounds, particularly once you learned that she had rheumatic heart disease, which caused her to need a heart valve replaced when she was twelve years old and another when she was eighteen.

  It seemed to me that their illnesses gave them an extra special mother-son bond, but the bond in fact was there long before Robert was ever tethered to the dialysis machine. After graduating from Morehouse College, Robert had planned to spend his summer relaxing and hoping his waiting list for Stanford Law School would turn into an acceptance to enter in the fall. Instead he spent the summer at Ginger’s hospital bedside. At age fifty-eight, she needed surgery to replace the two previously replaced heart valves, and almost died in the process. Her heart stopped twice within a few days after surgery, and she didn’t wake up for nearly a month.

  When Ginger woke up, she was upset to learn how long she had been in the hospital. And she woke to collapsing lungs that had been repeatedly punctured by ribs that were broken from CPR. She needed another surgery to make them heal properly.

  She went home with three wounds that needed to be cleaned and bandaged daily. One on her breastbone, which needed to be sawed in half for the heart surgery. Another over her windpipe, a remnant of the tracheostomy she needed to make room for the plastic tube that connected her to the breathing machine for such a long time. And a third on her back where they needed to go in to repair her ribs.

  A home-visiting nurse would come out three times a week for those first two weeks to change the wound dressings. Robert changed the dressings and everything else between the nurse’s visits and every day after the nurse’s visits stopped and through that fall and winter. He didn’t trust her care to anyone else, not even his father. Being on Stanford’s Law School waiting list made it easier. There was nothing concrete to turn down. He didn’t really want to be a lawyer anyway. It was just a path to the career in politics he secretly wanted.

  He prepared her breakfasts and lunches. He cleaned and bandaged the wounds for the six weeks it took them all to heal. The tracheostomy scar was the hardest. It would be caked with green pus that needed to be cleared away with a swab dipped in saline. He bathed her. Seeing her naked was no big deal. He, his father, and his brother were used to seeing her walk around the house naked. “This is my house,” she would say, and proceeded to walk around it any way she pleased, proudly displaying swinging breasts, pubic hair, and the scar from her childhood open-heart surgery that crossed her lower ribs, usually on her way to retrieve underwear from the dryer.

  The bedpan did take some getting used to, but he emptied it until she was strong enough to use the bedside commode. And then he emptied that. As she got stronger, he took her to doctors’ appointments and walked with her morning and evening.

  It was during this time that their conversations went deeper than those between most mothers and their sons. She talked to him about things that surprised me, like about the many, many men who had proposed marriage to her before his father.

  When she saw Robert appear in the doorway of my hospital room, she delicately put down the newspaper she held.

  “You told her I broke down?” he asked her.

  She nodded. Her nod was like a switch that opened the floodgates to his emotions. Tears rolled down his face.

  I climbed out of bed as fast as my bloated belly would allow and went to him. I wrapped my arms around his neck and held him to me, not caring that the back of my gown had fallen open, exposing at least three-fourths of my ass to his mother. His forehead rested on my shoulder as his own shook with his sobs.

  “I’m scared I wasted your kidney,” he admitted. His worst fears were coming true. He was right not to hope, wrong to believe a transplant would happen for him, he was saying to himself. It would have been easier to bear had it been a deceased donor kidney. You don’t have to look a deceased donor in the eye when things go wrong.

  “It’s not your fault,” I spoke softly in his ear.

  He knew it wasn’t his fault, but that didn’t matter. He believed his body had failed him. Again. Worst of all, he believed he had failed me too.

  “It’s gonna be all right,” I followed with full conviction, still believing with my entire self that everything would be all right. I had to believe. He had my kidney and my heart.

  7

  Another Dialysis Machine

  It was the morning of my third day out of the hospital, and I was on my way back to visit Robert. I needed naps and was moving slowly, but I knew I would feel back to my normal self in about a month. And I knew that this experience—me the doctor as patient—would be good for me, the doctor caring for patients—particularly the experience of spending nights in the hospital. Lying in a bed while the faces of strangers hovered above me, asked questions like “Have you passed gas yet?” while a different stranger’s hand lifted my gown without warning and pressed on my recently cut belly. The daily 4 a.m. checks of my blood pressure, pulse, respiration, and weight. The constant sharp, stabbing pain in my right shoulder, a common side effect of laparoscopic abdominal surgery. All of it gave me the ability to explain and empathize from the perspective of a lived experience, not just as a doctor who read about it in a textbook or watched somebody else go through it.

  As exhausted and slow moving as I was, I knew things were much, much worse for Robert. It was his eighth day in the hospital. He hadn’t wanted to talk much the night before. The urologist’s attempt to make the Z-shaped ureter work had failed. His IVs had clotted off the previous day, and because he was still so swollen, the nurses couldn’t find a vein to insert a new one. So he was hurting but no longer had an IV for pain medicine, and the pain pills only made him more constipated.

  A different transplant surgeon had joined the team that day, and she would take him to surgery the next morning. Again.

  I arrived at the hospital that day to find his room missing a bed. I went to the nurses’ station to ask w
hen they expected him back. He was out of surgery and back to recovery, but they were not ready for family to come in.

  After a while, Sara Cheng rushed into the hospital room where I waited. She introduced herself. She had just operated on Robert. She was tiny. Couldn’t have stood much over five feet. I knew the many strands of short black hair standing on her head were a result of her pulling off her surgical cap, but after the wide-eyed animated way she described what she had done—how she had dug through layers and layers of scar tissue from Robert’s old hernia repair in order to reattach my ureter to his bladder—I imagined her mussed look came from her damn near needing to climb into him to get the job done.

  “Why do you think he did that?” my mentor Len asked when I shared the series of events that followed the operating room decisions of Kobayashi, Robert’s first transplant surgeon.

  Len Syme had been a mentor of mine during my time as a Kellogg Scholar in Health Disparities, soon after I joined the faculty at Highland Hospital. He was a professor emeritus at University of California, Berkeley, and was considered the father of social epidemiology for his groundbreaking work in the social determinants of health—the concept that a person’s environment determines their health outcomes more than genes, more than health behaviors, even more than medical care.

  “Laziness,” I said without hesitation as I looked at him.

  Len looked good. Over the years I had grown to worry about him the way an adult child worries about her aging father. The last time I saw him about six months prior he seemed to have aged too much, even for someone in his eighties. But this time his hair and beard seemed less gray and more silver. His skin less pale. He had gained back some weight. He even stood taller, almost eye-to-eye with me again.

  “Interesting,” he said. He reminded me of how I had earlier in that same conversation attributed my and Robert’s first experience with the kidney transplant system to race, with equal conviction.

  “But you would have been equally justified in believing that this experience happened because of race,” he added, “because when one’s experience has been that bad things happen over and over again to them and the people who look like them, to attribute those events to the thing they have in common is a natural and valid response.”

  Huh, I thought. I had never made the comparison, never asked myself why I had labeled the events as I had. First I told myself that I was looking at the surgery purely through the lens of a physician, not a Black person. And as a physician it hadn’t occurred to me that another physician might either deliberately or subconsciously treat a patient differently because of his race—even though centuries of health care in American history begged to differ and even though I had drawn that conclusion just a few months before the surgery.

  Maybe the truth is I didn’t want it to be about race. I didn’t want it to be about something neither Robert nor I could ever change or hide about ourselves. I was tired of feeling, believing that it is about race.

  Laziness, on the other hand, could be resolved with a nap.

  But even if it had been laziness, my assumption made me wonder, had Robert been someone Kobayashi more closely identified with, if he would have made different choices in Operating Room 18 that day, nap or no nap. If he would have fought his way through the almost-impossible-to-get-through tissue if it was an Asian man lying on that table. If he would have tried a little longer to get that stent to pass across his surgical connection. If he would have started over on Robert’s left side, or just started there to begin with even though it would be a little harder.

  After Cheng left me, I went again to the nurses’ station to ask if I could go see Robert. I was told they weren’t ready for me yet in recovery. I imagined the nurse was doing the usual—getting all the paperwork done and tidying everything up before family was ushered in to see the patient, down to making sure the clean white sheet was folded neatly across his chest. I thought about the implications of the tidying as I waited and many times over as I have moved along in my career. Though I understood the tidying was meant to give the very true perception that the family’s loved one was being well cared for, I believed it covered up the reality—particularly in the cases of the very old or the critically and irreversibly ill bodies trying to die in spite of our machines and drips. I often found myself wishing that we would let the family see the ugly—the blood from the procedure or oozing from their nose, the shit filling the colostomy bag, the blood-tinged snot suctioned out of the breathing machine tube shoved down their windpipe.

  I say let family watch as their loved ones groan when their deep pressure sores are cleaned and packed with fresh gauze, when their breathing tubes are suctioned, or when they are just being turned for bathing. After all, these are all the things that must be done to take loving care of patients. If we let family see, then maybe there would be less willingness to hold on to a beating heart as enough life to insist upon every available intervention when no meaningful recovery is possible. If we let them see, maybe then there would be less fixation on details that don’t matter, like when her toenails were last cut and when his beard was last shaven, rather than on the life being lived—or not.

  In Robert’s case, I knew he needed me more than I needed to see tidy. I didn’t care how ugly it was, because I already knew what that looked like. And more importantly, I knew that the sooner he saw a face that loved him, the better he would feel.

  Instead, Robert opened his eyes before the nurse could nudge him awake and long before I was at his side. No one was there by his side. There was only a dialysis machine and he was tethered to it. Again.

  He sobbed.

  He sobbed like a stoic linebacker of a man who could no longer deny his emotions. He sobbed his disappointment, his pain, his hurt, his anger.

  “Did I lose the kidney?” he asked haltingly as he tried to regain his composure when the nurse appeared at his side. He needed to confirm what he thought he already knew.

  “No, no, noooo,” she said, trying to calm him. “The surgery went fine. The kidney is fine. We’re just taking some fluid off of you because you gained so much.”

  He exhaled in relief. As long as the kidney is OK, he thought as he drifted back to sleep, I can deal with the rest—the drains hanging out of his belly, the pain of his now even longer incision, the constipation from all the pain pills that didn’t work, the getting poked and prodded.

  It’s good that he came to that resolve, because fifteen minutes later an ultrasound technician began pressing her probe all over his fresh wound.

  When they finally let me in, his tears were dried and the sheet was folded neatly across his chest—and lots of pale yellow urine poured into the collection bag.

  The next day we learned that the ultrasound and a sample of the kidney taken during the surgery were normal. The worst was over. A future seemed tangible.

  Robert started making plans again.

  His first was to formally propose and present an engagement ring to me a couple of weeks after our hospital stays. Grown folks don’t need a few years to decide if this is the right thing to do. When you know, you know—especially when life had already taught you as much as it had us.

  Without my knowledge, he had called my parents to ask for my hand.

  “Your dad was so pleased,” he told me years later, smiling broadly. “He said no one had done that before.”

  I was touched to hear of Robert’s deference to my parents. I was also surprised to hear he was the first to do so, since my three sisters and I had generated six sons-in-law altogether before Robert entered the picture.

  I was visiting Robert’s home with his parents and relaxing in an armchair when he entered the room. He gingerly got down on one knee and held open the box to reveal a lovely diamond engagement ring.

  “Will you . . . marry me?” he asked softly with his voice trembling, his cheeks blushing, and his right temple twitching.

  “Yes.” I smiled at him, surprised at how nervous he was. How sweet, I thought, bec
ause there could not have been a surer thing—I had just given him my kidney. Of course I would give my hand.

  8

  The Candle Is Lit

  I hope nothing goes wrong today, Robert thought when he opened his eyes on the morning of August 6, 2005. It was nearly four months since his complicated hospital stay and hope was yet again part of his vocabulary.

  The digital clock on his nightstand read 6 a.m. Had this been a dialysis day, he would have already been tethered to the machine for nearly an hour. But it wasn’t a dialysis day. He didn’t have those anymore. Today was his wedding day. He climbed out of bed with purpose.

  Our wedding day was among the first things Robert had planned in a long time. I had a wedding before and would have been content to elope, but Robert wanted a wedding—“This will be my only wedding,” he insisted, and went about researching caterers, videographers, florists, bakers, musicians, and the like, making me the most carefree bride ever. He would present three options, any of which he would be content with, for me to choose. I was the opposite of a reality TV bridezilla, perhaps an artist’s dream bride because when we sat with the florist and baker and explained the feeling we were going for—light . . . summery . . . less formal—I would add, “Do whatever you want to do that fits in with that.” Their eyes would stretch and flitter with the excitement of being allowed artistic liberty, but also with a hint of disbelief. I would nod my certainty.

  My only responsibilities were the invitations, wedding programs, and my dress. I kept the invitation and wedding program simple and pretty. However, what started out as a plan to buy a simple, inexpensive sheath of a wedding gown was quickly cast aside when the saleswoman brought out a beautiful off-white, full-skirted gown with a short train. It was strapless, fitted through the bodice, and trimmed in pink flowers and lace.