12
I’m Good with That
I DON’T WANT TO SOUND CORNY HERE, or trite, or hokey, or banal, or hackneyed. (Sorry, I just got this new thesaurus and can’t put it down.) But you hear folks talk about having this “new appreciation for life” or viewing “every day as a gift” after they’ve been through something that’s been a life changer. Something like cancer. When I used to hear somebody say those things, I don’t think I scoffed at them; I just couldn’t quite grasp the concept. I felt I always had an appreciation for what I had—beautiful wife, great kids, fun job. But in the course of “doing life,” sometimes that appreciation drifted into the background just a bit. If you’ve ever felt that life had basically become getting from point A to point B, I’m right there with you. You know what I’m talking about—you’ve probably heard yourself say it.
“Oh, I’m so slammed right now. I just need to get through Wednesday, and I’ll relax.”
“I’m just thinking that tomorrow afternoon at this time this will all be finished.”
“This is our busiest time of the year. I’m just trying to make it to the end of the month.”
“Oh, I wish I could fast-forward three weeks.”
Well, here’s the thing. After that whole health scare/cancer reality/chemo fun, I found that I really didn’t want time to speed up. I didn’t want to have self-imposed or oftentimes work-imposed deadlines dictate the rhythm of my life. Sure, they were going to be there—there’s no eliminating them—but I was going to make a conscious effort to slow down, to stroll through the blackberry bramble and not miss anything. I was going to be present in the moment and not preoccupied with how busy things were about to become. So in that respect, I did gain a new appreciation for what every day might bring and was grateful to be given each and every one of them.
Dallas Willard said it best in a story related by John Ortberg in his book Soul Keeping: “Hurry is the great enemy of spiritual life in our day. You must ruthlessly eliminate hurry from your life.”2 Man, that’s a good one. And the more I considered it, the more I realized that when I’m in a hurry, everything becomes about me. I’m cutting it close getting to the airport, and the TSA line is glacier-like. “Am I gonna miss my flight? What if I do and can’t find another flight that gets me there when I need to be there?” Traffic on Interstate 85 between my home in Braselton and Atlanta is moving slower than the TSA line. “Will this put me behind in my prep for the game? Will this make me late for the meeting?”
You see, when I’m living my life trying to stay one second ahead of the deadline, I rush right past the person at the airport wearing that “Yes, I’m confused, but I’m trying not to look like it” expression as they try to figure out how to get from gate B31 to gate T18. When I’m not in a hurry to stay on my schedule, I have time to explain which escalator to get on, which train to board, and how many stops it’ll be. Or even better, I just say, “Follow me. I’ll getcha over there.”
When I’m rushed and focused solely on my agenda, I drive right past the family of four broken down on the side of the road in ninety-five-degree heat. Only when I stop and admit that while I know nothing about automotive repair, I’d be happy to give them a lift to somebody who does and wind up paying for their car repairs and buying their lunch—only then can I feel I’m truly trying to fulfill a purpose greater than my own. Only when I learn they were coming back from the funeral of a relative hundreds of miles away when their car broke down do I start to think, “You know, there was a reason I left the house when I did and took the route I did.”
These are matters in the spiritual realm, and as Dallas Willard said, “Hurry is the great enemy of spiritual life.” I bring up instances like these not so you’ll say, “Man, he is a great guy” but to point out that I stand in awe on a daily basis of the way God orchestrates life—how he connects the dots in ways I could never dream of if only I have the eyes to see and the heart to feel. And that’s not me—that’s how my Creator wired me.
This “nonbeliever” Cheryl Deluca-Johnson goes to Romania . . . and meets this orphan the nurse says is “no good” . . . and then calls her husband, Ernie, whose faith is dormant . . . and he says, despite what he and his wife had talked about, “Bring him home” . . . and this basketball coach from Indiana moves to Hoschton, Georgia, of all places . . . and puts this wheelchair-bound Romanian orphan on his basketball team . . . and in the process teaches kids at Mill Creek High School what it means to love. Sorry. That didn’t just happen.
God did that.
I trust that.
I’m good with that.
In fact, I’m great with that.
And when this headstrong TV guy happens to get information about a nondenominational church in Lawrenceville, Georgia . . . and then meets the pastor . . . and they say a prayer at lunch . . . and Jesus becomes central in his life . . . and cancer blindsides him . . . and he doesn’t fight it alone but vows to “trust God . . . period” . . . and comes out the other side with his cancer in remission . . . and then six months later finds himself standing in front of TV’s best at the Sports Emmy Awards in New York . . . and he’s accepting the Emmy for best studio host . . . and in his speech he says that “going through cancer taught him that God sometimes whispers and sometimes shouts that his way is better than my way” . . . Sorry. That series of events didn’t just happen.
God did that too.
I’m good with that.
In fact, I’m great with that.
In 2011, I’m watching my eighty-seven-year-old father, my best man, my best friend, my mentor, my role model wasting away from congestive heart failure and the early stages of Alzheimer’s. And I’m asking God, as if he needs my permission, to take him, to ease his suffering. And one more thing . . . let me be there when it’s time. On the morning of August 12, he’s been in hospice care for a week, and I stop by to see him on my way to the Atlanta Athletic Club, where the 2011 PGA Championship is being played, and I’m anchoring TNT’s coverage. And we sit, and I talk, and I’m hoping he can hear me. And I tell him for the millionth time how much I love him and then head to the golf course to work. The slow pace of play that day in round two means we stay on the air longer than expected, about twenty minutes past what was to be our 7:00 p.m. sign-off. The round completed, I leave the TV compound as quickly as I can, and while making the twenty-minute drive to the facility called Embracing Hospice, my phone rings, and my brother-in-law Jacky Cheek is on the other end telling me to hurry. I enter the room to find my mother sitting in the corner. She rises and hugs me. Her eyes are filled with tears.
“Oh, Ernie.”
And I see my father, mouth open, eyes closed, lifeless. I got there too late.
For the next five minutes, I just hug him and sob. His pain is gone. Mine is intense. I lost the most important figure in my life, and I was not there to hold his hand or whisper “I love you” when it happened. What if we hadn’t had to stay on the air past 7:00? Could I have made it in time? To this day I have struggled with that question, which remains unanswered. I have beaten myself up over it. But at the same time, when I take myself out of the equation, which is vital if not difficult to do, I realize that my mother, Lois, my dad’s wife of more than sixty years, was there for that moment, and I guess that’s the way it was supposed to play out. And again I strive to trust God . . . period . . . that those final moments of my father’s earthly life played out exactly as they were designed.
And only God knows that.
And while it’s taken a long, long time, I’m good with that.
In fact, I’m great with that.
Just under one month later, Saturday, September 10, 2011, I packed an overnight bag for a trip to Milwaukee, where the next day I would call the baseball game between the Milwaukee Brewers and the Philadelphia Phillies as part of our Sunday package on TBS. I had a 2:00 flight that afternoon and would swing by the Georgia Dome in downtown Atlanta to watch my daughter Carmen play in the Georgia State marching band before the GSU Panthers played football. We always joked that folks could tell Carmen was adopted because her musical talents certainly didn’t come from anybody in our family. She could play the guitar, the piano, the flute, and the piccolo and was now a member of the Georgia State drum line.
While I was at the dome I got a call from Cheryl telling me that Michael was sick, was having trouble breathing, and we talked about whether he needed to be taken to the hospital. I made calls to the hospital in north Atlanta that was across the street from Michael’s respiratory specialist and arranged for him to be taken there. I changed my 2:00 flight to 6:00 and met Cheryl and Michael at the hospital. Michael was twenty-three now and was struggling. It was pneumonia, and when you have muscular dystrophy, that’s major. He doesn’t have the strength to clear his lungs like we do.
The doctor arranged for Michael to be admitted, and Cheryl told me that with things under control I should go to the airport for my 6:00 flight. I would be back home in just over twenty-four hours after the Sunday game in Milwaukee. Once I got to Milwaukee, I checked in with Cheryl a couple times, and she told me Michael was resting comfortably and was in better shape than when I’d left him that afternoon.
When I’m doing weekend baseball, I have a Saturday night/Sunday morning routine. I fill in some of the scorebook the night before, listing the umpires, the pitchers in each team’s bullpen, and various notes on each team. In the morning, after the league stats have all been updated following Saturday night’s game, I go through about fifteen statistical categories and jot down the numbers relevant to the game we’re televising. To get that work done, I normally set my alarm for 6:00 a.m. on Sunday and am on my way to the ballpark by 9:00 for a 1:00 first pitch. But on that Sunday, September 11, before my alarm had a chance to go off, my phone rang, and Cheryl was frantic. When the nurse had checked on Michael early that morning in Atlanta, he had been unresponsive. Code blue is a term used when a patient requires immediate attention to be revived. Michael had coded, and a resuscitation team had been called. They were using paddles—defibrillators—to try to keep him alive. Cheryl handed the phone to the doctor who was standing next to her and asking if she had our permission to intubate, to insert a breathing tube in Michael’s trachea.
“Is this an absolute necessity? What if we don’t?”
“Your son will die, Mr. Johnson.”
“Then you do everything you have to do.”
I tried to calm Cheryl. She had seen it all happen—Michael lying perfectly still, his fingers blue, the alarm alerting the team, the furious code blue activity—before a nurse had ushered her into the hallway. I knew there was nothing I could say that would erase those images.
Our travel department put me on the first flight out of Milwaukee, and I walked into the intensive care unit at 2:00 that afternoon. Michael was hooked up to more machines than I cared to count. My daughter Carmen says I just stood there saying, “Oh, Michael . . . Michael . . . Michael,” but I remember none of that. I just remember a feeling of utter helplessness. The rest of the family had been there for hours, but now I would see them for the first time as Cheryl and I walked into the waiting room. We had all just been through a tough stretch, losing my dad the month before.
My mother voiced exactly what I was thinking. “This can’t be happening. It’s just too soon.”
Michael was in the ICU for two weeks. The breathing tube they’d inserted on that frantic Sunday morning was in the next few days replaced by what would be a permanent fixture. He’d had a tracheotomy, and so now clear plastic tubing extended from his windpipe and was hooked to a ventilator at his bedside. That machine would allow Michael to breathe, and we were told that while sometimes that can be a temporary thing, Michael would never come off the vent. After two weeks, doctors told us Michael had reached the point that he could be taken out of intensive care but still needed to be hospitalized, and they recommended a facility that specialized in long-term acute care.
On September 23, he was taken by ambulance about sixty-five miles to Landmark Hospital in Athens. Michael may not be able to communicate as well as the rest of us and can’t tell us point-blank that “it hurts here, right around my third rib, when I inhale” or “my lower back hurts when the bed is reclined at that angle,” and that certainly can make caring for him challenging, but he is a fighter. We had no idea how long this next hospital stay would last or if it would even end with Michael going home with us. All we knew was this: we would be with him every day, and that meant rather than hitting the road to call the American League Division and Championship series on TBS, I’d be doing what every other baseball fan would be doing—watching them on TV. But I’d be watching from Michael’s hospital room.
Cheryl and I took turns staying overnight, with our oldest daughter, Maggie, taking a night or two as well, sleeping in a bedside recliner. Sleeping is probably not an accurate term. With nurses making numerous visits in the wee hours to administer breathing treatments, or take vital signs, or draw blood, we did more “resting” than sleeping. The overnight settings on Michael’s ventilator made it impossible for him to speak, so if he needed to get our attention in the middle of the night, he would make sounds, hoping we’d notice. And then we would try to read his lips. “Rub back.” . . . “Go pee.” . . . “Muscle hurts.” . . . “Love you too.”
So let me try to give you a snapshot of where we were. There was the obvious stuff. There was a machine—the vent—that allowed Michael to breathe. There was a feeding tube hanging from his stomach through which he got liquid meals. There were IV lines that led to bags of antibiotics hanging from IV poles. And there were various beeps and tones coming from his machines, some of which were just normal, routine sounds, and some of which sent a nurse double time into the room.
What we couldn’t see, and what Dr. Tony Sagel was working tirelessly to determine, was why Michael couldn’t shake a series of infections. He was experiencing FUOs—fevers of unknown origin. There were early signs of sepsis, a frightening condition in which bloodstream infections spread through the body and damage the internal organs. The only times Michael left his bed for three weeks was when he was lifted out of it and placed on an ambulance stretcher to be taken down the street to Athens Regional Hospital.
On one trip, he was given a CT scan of his spine, and on another, he had an electrocardiogram (EKG) to see if there was an infection of his heart valves. Then there was the procedure called a thoracentesis. Fluid had built up between Michael’s chest wall and lungs. Nurses had to hold him in a seated position because he couldn’t support himself. Dr. Hugh Jenkins inserted a tube into Michael’s right side just below his rib cage. Normally, there is a tablespoon of fluid in that area. Dr. Jenkins drained two liters. Not two teaspoons, or two tablespoons, or two cups—two liters. Tell me, where are the blackberry moments when you’re watching your son go through this? Sometimes you find them in a post-op conversation.
“How’d it go, Dr. Jenkins?”
“It went well. We drained two liters at this point, and the tube is still in place, so we’ll likely get more out of there when he’s back at Landmark this afternoon.”
“And he did okay? Is he hurting?”
“Well, it’s not the most comfortable procedure, and given that he has MD, we had to hold him really steady, but he did just fine. But you know what he said when we were finished?”
“I don’t, but just taking a shot, I’m sure it had something to do with what you or the nurses drive.”
“No, we went through that before we started. When we were finished and got him back on the bed, he looked at me and whispered, ‘Good job.’ That’s a pretty special young man.”
“Can’t argue with you there.”
Back to Dr. Tony Sagel for a moment. He saved Michael’s life. He was the one who in time, through a frustrating and sometimes maddening process of trial and error, doggedly tracked down the source of Michael’s infections and subsequent fevers. There were times my phone would ring, and it would be Dr. Sagel.
“Hey, you know that culture we took from Michael this morning? Came back negative. But don’t worry. I’ve got another idea on what might be causing this. We’ll get there.”
He was right; we did get there. Four weeks into Michael’s stay at Landmark, the source of the infections was discovered, the medicine he needed was pumped into his veins, and the color returned to his face. Michael started to become Michael again. We were able to get him out of bed and into his wheelchair, and with his ventilator and a few other machines in tow, he was allowed to go outside for an hour or two to get some fresh air. As his fifth week at Landmark began, Cheryl and Maggie and I commenced a crash course on how the ventilator operated, what every alarm meant, how to work the suction machine to clear his lungs, how to connect the oxygen tanks and adjust how much he needed, how to use the machine that measured the oxygen saturation of his blood and his heart rate. He had a lot of gear.
Michael’s favorite nurse, Brooke Stoyle, or Brookie, as he called her, taught us how to perform daily trach care—how to quickly and efficiently (a matter of seconds) disconnect Michael from his ventilator to change the inner cannula, the tube that’s inserted into his trachea. We had all of the equipment we’d need to turn Michael’s bedroom at home into a hospital room and were required to have a natural gas–powered generator installed at the house that would immediately kick in if we ever lost power so his equipment wouldn’t be affected. By the end of the fifth week, on October 27, Dr. Sagel told us the words we were dying to hear but had often doubted we ever would.
“You can take Michael home.”
Now the nursing training we’d received in Athens would be put to the test at home in Braselton. It would be a few weeks before we were able to finalize with our insurance company the details of overnight nursing coverage. In time, we would have a nurse every night from 10:00 p.m. until 10:00 the next morning. But in those early weeks, it was Cheryl and Maggie and me. It’s one thing to hear a machine’s alarm go off at 3:00 in the morning at Landmark. You just ring for the nurse to come in. Now for the time being, we were the nurses.
And we were doing okay.
I’m underselling that.
Let me put humility aside here for a second.
We were pretty darn good.
And if we needed any validation in that regard, we got it, unsolicited from Michael’s new pulmonologist, Dr. Craig Brown, who saw him once a month and changed the entire trach apparatus every other month. He would check Michael out in his office and look us in the eye and inspire us.
“You folks are doing an incredible job. Keep it up. He looks great. His lungs sound great. Keep doing what you’re doing.”
You can’t put a value on feedback like that or on the text message with his name on it simply asking, “How’s our boy feeling today? Did we knock out that little fever from Tuesday? Just wanted to check in.”
This unscripted phase of Michael’s journey had brought with it a lot more equipment and a lot more responsibility, but we weren’t running from it or cursing it. We were embracing it. In the course of what was a difficult situation, each day bringing a new challenge, Cheryl and I had a deep appreciation for what was required of me as a father and Cheryl as a mother. When you’re doing everything for a young man who doesn’t have the strength to do anything on his own, a powerful essence of servanthood becomes ingrained. When you wake up in the morning and suction the mucus from your son’s lungs, and you position his body in a sling attached to a ceiling-mounted lift system, and you take him to the bathroom and wash him and shave him and dress him, and you get him into his wheelchair, all the while making sure that every machine is correctly set, it’s downright impossible to think about yourself. I need that. It forces me to wake up each morning with the attitude “What can I do for you?” not “What can you do for me?” In its own way, it provides a daily blackberry moment.
Michael had lost a lot of weight in the hospital—thirty-seven pounds. He hadn’t eaten solid food since September 9, and now it was the day before Thanksgiving, November 23, and we were in midtown Atlanta for a swallow test to see if Michael, now permanently attached to a ventilator and with the continued weakening of his muscles because of MD, was capable of swallowing solid food without choking.
It was a fascinating test actually. He was given applesauce and saltine crackers and peanut butter, all coated with dye, and somehow we could watch on a monitor as he chewed and swallowed. And I’ll be doggone if he didn’t pass that test. We got the go-ahead to start him the next day on soft, moist foods that would be easy to handle, and we could progress from there.
Where are the blackberry moments when you deal with a life-and-death situation like the one Michael had been through? Well, you find them when you’re gathered around a Thanksgiving table in 2011. This kid who had coded, who was now on life support but was finally home, wasn’t having his meal poured from a can through a feeding tube. He was smiling and eagerly awaiting the next spoonful of stuffing, drenched in gravy, on what will forever be our most unforgettable and gratitude-filled Thanksgiving Day. And you know what?
God did that.
I’m good with that.
In fact, I’m great with that.