Lessons From Lucy

by Dave Barry

  A chance to walk again.

  The doctors kept asking Sophie the same questions.

  “Can you wiggle your toes?”

  “Do you feel this?”

  Again and again, Sophie had to answer no, she couldn’t wiggle her toes. No, she didn’t feel anything.

  Over and over and over, she had to say this. Over and over and over, day after day, while we all stared at Sophie’s bare, motionless toes.

  One-third do not recover.

  Sophie never complained—about the questions, or the treatments, or anything else. She was scared, but she never panicked. She never showed bitterness, never lashed out. She never once asked, “Why me?” She smiled at everybody who came in. She thanked every doctor and nurse, even the ones who had just given her a shot. She was stronger and braver than I could ever be.

  So was Michelle. She never left Sophie’s side, a mother guarding her young. She slept as best she could on a recliner chair, night after night, so she could be there at 1:48 a.m. and 3:37 a.m. and all the other seemingly random times when hospital people came into the room to do still more medical things to Sophie.

  I went home at night, to check the house, get the mail, walk Lucy (we had somebody look after her during the day) and try to sleep. But—this is another thing every parent knows—you don’t really sleep when your child is suffering. It’s almost worse if you do fall asleep, because when you wake up, there are a few seconds when everything seems normal. Then you remember, and that is an awful feeling. Your stomach goes hollow again, and you wish, at least for a moment, that you could go back to being unconscious.

  When you’re in that situation, you see two worlds. There’s Normal World, the one everyone else seems to be in—the one you used to be in—where people are going to work, buying groceries, watching the TV news, helping their kids with homework, getting their cars fixed, laughing, gossiping, making plans and doing all the other things people do in normal life. In Normal World, it’s possible to be happy.

  When your child is suffering, you’re in a different world entirely, Hospital World, a constricting, bleak, isolated place. Normal World concerns don’t matter to you at all. You don’t care about the news, what the president said, what his critics said, what the news people thought about it. You don’t care if your car needs servicing or your roof has a leak. You don’t make plans. You don’t want to see anybody. You don’t care what you’re wearing, or if you’ve slept, or when you last ate.

  All you care about is your child. All we thought about, all the time, was Sophie, Sophie’s legs, Sophie’s toes. When Sophie was sleeping, Michelle would whisper to me, “I just want her to get better. I don’t want anything else. I would live the rest of my life in a tent. I just want her to get better.”

  I tried hard to hope, but I was never far from despair. On Sophie’s third day in Critical Care, the Monday morning that we were supposed to have flown with her up to Duke, I was driving to the hospital via a route that took me past Sunset Elementary School, which Sophie attended from kindergarten through fifth grade. That Monday happened to be the first day of public school in Miami-Dade County. I stopped at a red light in front of the school and watched as some parents walked their children across the street. Michelle and I walked Sophie across that same street, at that same spot, a thousand times. Sitting at the light, seeing those little kids, with their hyperactive little-kid legs, walking where my happy, healthy little girl once walked, I was overwhelmed by a feeling of hopelessness, of dread. At that moment, I wanted to just disappear from the earth.

  Which is another choice you don’t get, as a parent. You take a deep breath, and when the light turns green, you continue driving through Normal World to Hospital World, to be with your child, because that’s all you can do.

  Hospital World is a strange, unsettling place. You mark the passage of time not by hours and minutes, or even day and night, but by procedures—the next shot, the next blood draw, the next round of plasmapheresis, the next X-ray, the dreaded spinal tap—which can happen seemingly at any time, nobody is ever sure exactly when. You wait. It is mainly what you do.

  You have no privacy. People keep coming to your room: nurses, food-service people, housekeeping people, hospital administrators, occupational therapists, physical therapists and, of course, doctors—in our case, many of them—neurologists, nephrologists, hematologists, infectious-disease specialists, internists and more. Hospital people observe a protocol when they visit: They knock twice, then usually before you can respond, they enter, from early morning until late at night and beyond. Sometimes you know them; sometimes you don’t. After a while you get used to the unending parade of medical visitors, unquestioningly submitting to whatever they’re there to do.

  My running hospital joke—in my role as Mr. Jokey Dad, trying to cheer Sophie up—was that I was going to start walking around the hospital, knocking twice on patients’ doors and announcing that I was the staff herpetologist. I’d go in, ask the questions that doctors ask—“Any changes? Experiencing any pain?”—maybe check the patient’s pulse, then leave. I seriously believe that 95 percent of hospital patients would totally accept me as legit, especially if I wore khakis and a collared shirt. If I could figure out how to get the insurance companies to accept herpetologist bills, I’d clean up.

  I spent a lot of time trying to entertain Sophie, because in between medical intrusions, Hospital World is boring. You can watch TV, but it’s daytime TV, which means you have to choose between cable-TV-news people endlessly chewing the same cud, or astoundingly mindless reality shows such as Say Yes to the Dress, in which brides-to-be agonize endlessly over which wedding dress to buy, a decision they appear to take far more seriously than, say, who their husband will be.

  We watched many episodes of Say Yes to the Dress, as well as a show called Extreme Couponing, which deals with people who are obsessed with using coupons to save as much money as possible on their grocery bills, even though this strategy means coming home from the supermarket with twenty-seven cases of Tabasco sauce and a sixty-three-year supply of tampons.

  We binge-watched Friends, New Girl and a trivia game show called The Chase. Sophie and I also got into crossword puzzles, and I will state in all modesty that we became quite good at them. I don’t know if many eighteen-year-olds know that when the clue is “Singer Fitzgerald,” the answer is “Ella,” but Sophie Barry definitely does.

  That was how we passed the time in Hospital World, being as mindless as possible until it was time for the next procedure, the next shot, the next doctor knocking twice and asking Sophie if she could wiggle her toes.

  Which she still could not. A week went by, and it felt as though Sophie had been asked to wiggle her toes a hundred times. Each time we would all stare at her bare feet.

  Nothing.

  “I’m sorry,” Sophie would say.

  “It’s OK!” we’d say. “It’ll come.”

  But with each day, our doubts grew. At least mine did. I didn’t say so to Michelle, but late at night, as I lay in bed, the awful thought kept forcing its way into my sleep-deprived brain.

  What if this is it?

  During this time Michelle and I were getting hundreds of texts, emails and phone calls from family and friends, wanting to know how Sophie was doing. “We’re thinking about her all the time,” they said. “We’re praying for her.”

  These were not perfunctory prayers: Sophie is truly beloved. I know that, as her dad, I can’t be trusted to give an objective opinion on this, but anybody who knows Sophie would tell you the same thing: She is a genuinely good person. She’s also smart and funny, even edgy, but what really distinguishes her—and has since she was a little girl—is her character. She has never been cruel or mean-spirited to anyone. She is generous, thoughtful, gracious. She would never let down a friend, and she has many, many friends. She’s just good.

  So when word got around about her condition, the shock was greater than if it had been, say, me. People could not accept the wrongness of
this thing happening to this extraordinary young woman, this beautiful soul. And so they prayed for her, and sent messages expressing love and hope and good thoughts, and an aching, anguished need to be able to do something more.

  This is from an email that my friend Ridley Pearson sent me in the first days:

  All my prayers, man. I know you don’t think they help, but I’m just at a loss and have to do something.

  Ridley was referring to the fact that I’m an atheist. Here’s how I answered his email:

  Hey, I’ll take all the prayers you got. I’VE been praying. I keep saying “Please.” I don’t know if anybody’s listening, but I’m saying it.

  That was true. I was saying “please” all the time—in the hospital hallways, in the car, alone at home. Please let Sophie be OK. To be clear: I was still an atheist. My feeling was that if there really was a benevolent all-powerful being capable of healing Sophie, that being would never have let this happen to her in the first place. But I was saying “please” anyway. Just in case. Just—in Ridley’s words—to do something.

  I did other things, too. Weird things, good-luck bad-luck things, like always entering and leaving the hospital via a certain route, or avoiding looking at certain photos on the hospital walls. Really. I knew this was irrational, even crazy, but I did it anyway. Just in case.

  Ten days passed. Sophie’s legs still showed no movement. I wanted to put a sign on her bed, to keep the doctors from asking: NO, SHE CAN’T WIGGLE HER TOES. WE’LL LET YOU KNOW.

  We tried to keep her distracted, inside our little Hospital World cocoon. We had our inside jokes, about the incomprehensibility of the hospital schedule, about Say Yes to the Dress, about friends who kept sending us food in quantities far larger than we—or for that matter the Pittsburgh Steelers—could possibly eat (we have a lot of Jewish friends). Sophie also welcomed distractions from the therapy dogs that volunteers brought to the hospital to cheer up patients. Here’s a picture of Sophie getting some therapy from a dog named Clue, who visited on Sophie’s tenth day in the hospital.

  The morning after this picture was taken, I was driving to the hospital after another night of little sleep. I was stopped at a light in South Miami, waiting to turn onto U.S. 1, when my phone rang. It was Michelle.

  She said, “Sophie moved her leg.”

  I don’t know what Michelle said next, because I was shouting YES! YES! YES! over and over, and then I was crying so hard I had to pull off the road. This may sound melodramatic, but it’s true: That call from Michelle was the happiest moment of my life. I didn’t really know, until then, how terrified I’d been that I would never hear those words.

  I wiped my eyes, composed myself and drove to the hospital way too fast (although I still was careful to enter the building via the good-luck way). I ran to Sophie’s room and stood with Michelle, looking at Sophie’s legs, as Sophie concentrated until her left knee clearly moved a half inch sideways, then back, then sideways and back again.

  Sophie said, “I’m doing that.”

  Then I was crying again, but I didn’t mind that Sophie saw me, because it was happy crying.

  It was only one leg, and it was only half an inch. She still couldn’t walk; she couldn’t even sit up. There were still no guarantees that she would recover. But something—the medicine, the prayers, Clue the therapy dog—was making Sophie better. Now we had reason to hope.

  And from that morning, our hope got stronger each day, as Sophie continued to improve, one tiny muscle movement at a time. We celebrated each new sign of progress; we rejoiced when, at last, she could wiggle her toes for the doctor.

  In another sign of progress, Sophie was disconnected from the IV drip and monitor wires that had kept her tethered to the hospital bed. She was also granted grounds privileges, which meant we could take her, in a wheelchair, out of the hospital building and roll her around the property. On our first outing, September 1, we left the hospital by the same doorway that Sophie had entered back on August 18, which was only two weeks earlier but seemed like forever ago. Escorting Sophie in her wheelchair was a posse consisting of her brother Rob, sister-in-law Laura, nephew Dylan, Michelle and me. Sophie led us in a grounds-privileges chant:

  SOPHIE: When I say “grounds,” you say “privileges.” Grounds!

  POSSE: Privileges!

  SOPHIE: Grounds!

  POSSE: Privileges!

  And that’s how we rolled, Sophie and her badass posse. Here’s a group selfie Sophie took during that outing:

  Yes, we look like idiots. But now we were hopeful idiots.

  After three weeks, Sophie was moved to the neurological rehabilitation unit, where the focus shifted from pumping medicine into her body to teaching her muscles how to work again. Four or five times a day, she worked with physical therapists and occupational therapists, painstakingly relearning physical actions that most of us perform without thinking, like sitting up, or reaching for something without falling over.

  Michelle and I went to the rehab gym to watch her and cheer her on, the way we watched and cheered for her in a thousand soccer games. Except that instead of cheering her for a good pass, or a defensive play, we were cheering for each sign of progress in her recovery—like when, strapped to a rehab contraption, she stood. She wasn’t standing unassisted—without the contraption, she’d have fallen—but she was on her feet again, and the sight made our hearts soar.

  Her next contraption was a kind of sling with wheels, which enabled her to walk, sort of. From there she moved to a series of walkers, which got smaller and smaller as Sophie was able to rely more and more on her legs.

  Until finally came the wonderful day when Sophie, without any help, walked. She was a little wobbly, and she couldn’t walk far.

  But she could walk again.

  After five weeks in the rehab unit, the doctors declared she was ready to go home and become an outpatient. And so, forty days after entering the hospital, Sophie left the same way she entered—in a wheelchair—but once outside she stood and walked to the car.

  I’m writing this a couple of months later, just before Christmas 2018. Sophie still has some healing to do and is still doing physical therapy. She has more doctors, and more procedures, ahead of her. But she’s strong, and walking really well, even driving, and living a nearly normal life again. In January she’ll begin her new stage of life as a freshman at Duke. There has never been a student more eager to get started.

  That’s Lucy in the background.

  The last four months have been, by far, the most difficult of my life. Physically, I lost a bunch of weight and went through a rousing case of shingles, which is a funny name for a disease that otherwise has very little amusement value. Emotionally, it has been brutal. Things are a lot better now, but I am never, ever going to forget the anguish, and the fear, of those dark early days.

  I don’t mean to be self-pitying here. It was much, much tougher for Michelle. At least I went home to sleep, spending a few hours outside of Hospital World. Michelle never left. She never quit, never flagged, no matter how tired she was after all those nights on that hospital recliner. She was Mom Strong. She is the second-strongest person I have ever known.

  The strongest is Sophie. Through this whole ordeal, no matter how scary or uncertain her situation was, no matter what medical discomfort or indignity she was subjected to, she never complained. Think about that: She never complained. She never let herself get too far down; she never lost her sense of humor. Michelle told me that late one night, when they were almost asleep, Sophie said, “You know, Mom, this would make a really good college essay.”

  A number of people have said to me that, in a way, this experience will ultimately help Sophie, because it will give her perspective, make her resilient, teach her to deal with adversity. I know these people mean well, but my feeling is, Sophie was already a remarkably kind and wise person. She didn’t need to be taught a lesson, especially not in such a cruel manner.

  I also didn’t get much comfort from the pe
ople who told me that God does things for a reason, and what happened to Sophie was part of His master plan. Again, these people meant well. But when you’re watching your child suffer—your thoughtful, kind, generous child who never did anything to hurt anyone—it doesn’t help to be told that her suffering has some greater purpose not knowable to you. At least it didn’t help me.

  This is not to say I learned nothing from this experience. I definitely learned a lesson—the most important lesson I’ve ever learned. It’s a lesson that came to me gradually, and one that I was reluctant to accept at first. But I have come to believe it, and I pass it on to you now:

  Be grateful for what you have.

  (It’s probably more than you think.)

  When Sophie first got sick, gratitude was the last emotion I could have imagined feeling. I was shocked, afraid, angry; I saw nothing to be thankful for.

  That changed early on, even before that miracle morning when Sophie moved her left leg. It started with the intense and sustained outpouring of love that flowed toward us from family and friends all over the country. I could feel that love, and it gave me strength at a time when I desperately needed to be strong. So I am very grateful to those people for their love and support. And, yes, for their prayers.

  I’m also grateful for Sophie’s doctors, skilled and dedicated people who, unlike me, could actually do something to help her. In our shock and fear and confusion, we needed to trust them, and they justified our trust.

  I’m grateful for the Baptist Hospital staff, especially the nurses. If you’ve ever been hospitalized, you know that the doctors pop in and out, but the nurses stay. They’re the ones who watch over you; they’re the ones you call when you need help. Their job is physically and emotionally demanding, and at times unpleasant. But they never let us down. Every nurse Sophie had, and there were many, was encouraging, caring. I don’t think you can do that job and not be a good person.