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SEEING THROUGH THE FOG
HOPE WHEN YOUR WORLD FALLS APART
By ED DOBSON
David C. CookCopyright © 2012 Ed Dobson
All rights reserved.
My first recollection of something being wrong was on my fiftieth birthday, December 30. I was at a funeral home, meeting with the deceased's family so I could conduct the memorial service. Aside from planning specific details about the service, this meeting also gave me the opportunity to get to know the deceased in a better way. As I sat in a circle with the family, I was busy taking notes. The entire time I was with this family, my eyelid was twitching. I would rub it, but it made no difference. I would blink hard, but to no avail. The entire time I wrote notes, my eyelid was twitching. I thought, Well, this is what you get when you turn fifty!
Fortunately, when I left the funeral home, my eyelid stopped twitching. But then the twitching spread. I noticed it when I lay down in bed at night—muscles throughout my entire back were twitching. Even my wife noticed it, and she encouraged me to go see the doctor. I agreed with her, but I never made an appointment.
Months later it was summer, and every August for the past several years, I would go backpacking for a week with about twenty high school students in Manistee National Forest in northern Michigan. We would take students about to enter their senior year in high school and spend a week with them, getting to know them better. It was one of the weeks I looked forward to most every year.
Backpacking is brilliant. Everything you need, you put in the backpack. Once you enter the woods, you are on your own. If the tent leaks, you fix it. If the cooking stove doesn't work, you fix it. I love it. For most of the students, it is their first time backpacking. The first few days they are really nervous. But gradually they adjust. They carry their own backpacks. They set up their own tents. They cook their own food. They dig their own toilets. If it is hot, it is hot. If it rains, it rains. We are at the mercy of the elements, the trail, and each other.
But this year, I realized I was having a few problems. I was having trouble opening jars. I was having trouble pumping the handle on the water purifier and actually found it tiring, which was unusual. My backpack seemed heavier than in years past. In fact, on the third day I allowed a few students to carry some of my stuff, which I had never done before.
But just as I had done the previous December, I chalked it all up to the idea that this is simply what happens when you turn fifty.
* * *
One morning in early October, I was writing out my sermon notes when something strange happened. I had this sensation that my mind and my hands were not completely coordinated. It was as if my hand was a second behind my brain. Now, for the first time, I was truly concerned. That Sunday, like always, I sat in the front row during the service. Right behind me was a neurologist friend with whom I had played golf on many occasions. During the congregational song right before I was to preach, I turned around to him.
"When I was writing my notes this week, I had a strange feeling that my mind and my hand were not coordinated. Also, I've been having difficulty opening jars when I backpack. What do you think that is?" (As if this doctor was going to diagnose me during the morning service on Sunday!)
"I think you better come see me—like, tomorrow."
I made an appointment the following day. The neurologist examined each of my muscle groups, at times holding my hands and having me push or pull in certain directions.
Then I went into his office to talk with him.
"There are several possibilities of what is going on here," he said. "First, your twitches could be benign fasciculation. That's twitching. Everyone twitches."
"So I could just be a big twitcher. I can live with that."
"On the other hand, it might be ALS."
ALS? That was much worse than being a twitcher. My head became foggy. It was as if everything around me slowed down. I could hardly hear anything else the doctor said as he explained what exactly amyotrophic lateral sclerosis is.
As I sat there in his office, I remembered two people at Calvary Church who had died of ALS and wondered if I would share their fate.
The first was a young man named Caleb, who was diagnosed shortly after I became pastor. He was only twenty years old and had been a star athlete who excelled in racquetball, pole vaulting, and other athletics during his high school and early college years. For seven years I walked with him during his journey with the disease.
I played golf with Caleb while he was able to walk. The last time we played, his legs were so wobbly that when he hit off the tee, I thought for sure he was going to fall over. He also insisted on driving the cart, which increased my prayer life. Once his legs failed him, we took to playing video games at times—he had a flight-simulator game where you could pretend to fly a Cessna around Chicago. He handed me the controller once and told me to give it a try. I got the plane off the ground but then turned around and around and couldn't find the airport to land. For some reason he laughed and laughed that I couldn't find the airport. He took the controller with his weakened arms and hands and within seconds had the plane back on the ground.
As he continued his downward spiral, I tried to visit with him every month. I remember the day he told me he had reached a major decision.
"There's something I want you to see," he said. "I am going to print something off the computer, and then I want you to read it. But I want you to read the whole thing before you comment."
So I sat there in silence reading what Caleb had written. He had decided that seven years was enough with ALS. He had made the decision that beginning the following week, he would refuse food. He asked me what I thought.
"Well, you are in the process of dying, one muscle at a time. This is irreversible. By refusing food, you are simply speeding up that process. So I think I would support you in your choice not to take food."
He smiled. And this kid had one of the greatest smiles I have ever seen. I realized how much I would miss seeing it on his face. I visited him many times in the hospital while he refused food. It was painful to see him in that condition, but I decided that it was his choice and that I would support him. Not everyone felt the same way; in fact, many of his good friends turned against him in those final days.
The second man I thought of as I sat in the doctor's office that October day was Fred, a successful farmer in his sixties. One day Fred was riding in a golf cart, and when the driver made a sharp turn, Fred fell out. A series of doctor visits stemming from that accident eventually resulted in the diagnosis that he had ALS. Fred's health deteriorated quickly. I frequently visited him on his farm, often helping him exercise his muscles to avoid cramping. When Fred lost the ability to speak, he would shine a light attached to his glasses on various letters on an alphabet card to slowly form words. I was with him the night before he died. On that final night, he used that alphabet card to express nothing but love for his family, who were at his side when he passed.
So as I was sitting there in the doctor's office, I could see Caleb and Fred in my mind. But as I saw them, they were in their worst conditions. And I thought, Is that me? Is that my future?
"There are some tests that I can do," the doctor said. "But if I were you, I would go to the University of Michigan ALS clinic and let them run the tests." He also told me that it would likely be a month before I could get into the clinic. A month of waiting in a fog of uncertainty.
So I agreed to go to the clinic. My mind was racing in a million directions. The doctor walked me to the door saying he would set me up with the U of M neurology clinic and told me to call him when I got the results. When I walked outside, the sun was shining. The leaves were beginning to turn. It was one of those incredible October afternoons. As I got into my truck, I realized that my world had been turned upside down. Nothing would ever be the same again.
I sat there in the truck for a long time, alone. I remembered a trip to Israel years ago. Just outside Jerusalem is the ancient site of Bethany. If you walk down one of the back roads, you will come to a sign that says "The Tomb of Lazarus." After paying a man several shekels and ducking under a doorway, you encounter a spiral stone staircase that goes down and down and down. When you get to the bottom, you have to crawl under a large stone. Once you crawl under that stone, you are in an authentic second-temple-period burial chamber, with walls lined with shelves for stacking the bodies of the deceased. It's dark. It's cold. It's musty. It's claustrophobic. It feels like death. It is far from the laughter of children and the sunshine above.
Sitting in my truck, I felt like I was underground in that tomb again. And three little letters sent me down that spiral stone staircase—ALS. I didn't know what to do!
The easiest thing would be to lie down on one of those shelves used for the bodies and just wait for death. But do I really want to give up? Do I really want to lie down and die?
* * *
The month of waiting that followed that first appointment was terrible. On some days I was absolutely convinced beyond any shadow of a doubt that I had ALS. On other days I wholly believed that I didn't have any of the symptoms of ALS. The uncertainty of those days drove me crazy. If I just knew my diagnosis, one way or another, at least then I could move on with my life.
The Internet can be a wonderful way to research medical conditions. I accessed many different sites that month, accumulating a vast layman's knowledge of ALS. I soon discovered that one of the problems with ALS is that it is very difficult to diagnose. Doctors actually look at all the other possible explanations for a patient's situation, and if none of them work out, then ALS becomes the default diagnosis. I also visited chat rooms for ALS patients. I think those were the most helpful because I was talking to real people who had the disease, and they understood what I was facing.
Continuing to work during that month of waiting was probably the biggest and strangest challenge of all. I still had to study and prepare sermons. I still had to make visits to the sick. I still had to conduct weddings. I still had to conduct funerals. I still had staff meetings to attend. I still had to preach every Sunday. And through all of these daily activities, which I have always felt so blessed to do, I experienced an underlying sense of doom. Sometimes in the middle of my preaching, I wanted to just stop and tell the congregation what was really going on. Sometimes while counseling others, I wanted to stop and discuss what was happening to me. It seemed to me that their problems were not as significant as mine. While visiting people undergoing cancer treatments, I would think, Well at least you have the possibility of a cure. I don't. I didn't do any of those things, thank goodness. But just getting out of bed every day, showering, getting dressed, eating breakfast, and going to work was a huge challenge for me while the cloud of uncertainty loomed overhead.
* * *
Finally the day came for my follow-up appointment at the University of Michigan ALS clinic. It was the week before Thanksgiving. My wife, Lorna, and I left the house early in the morning to make the two-hour drive to Ann Arbor. As I drove, my heart was pounding. I knew that something serious was going on, that this was going to be a big day. But I didn't know what that meant. We stopped at one of our favorite bars near the hospital to get lunch. I tried to eat what would normally be a delicious meal, but I just wasn't hungry. A good beer probably would've done me good that day, but I stuck to water.
At the hospital, we parked the car and began our walk through the vast hospital complex toward the ALS clinic. After registering and taking a seat in the waiting room, I noticed a man sitting in a wheelchair. His pale face and wispy gray hair sat atop a thin, tall frame. His arms and legs were motionless beneath his sweat suit. His hands occasionally twitched, and he used one of them to operate the chair. My heart sank as I realized I was looking at my future if I received a diagnosis of ALS that day.
The wait was agonizing, but eventually we were ushered into a small room to wait for the doctors. Several doctors came in; perhaps some were residents or students. They began by taking my medical history and wanted to know my recent symptoms. Then one of the doctors began testing all of my muscle groups, just as my neurologist friend had done the previous month. I tried to read their expressions to see if they could already tell I had ALS. But they were all poker-faced. They had me go out in the hall and walk the length of it on my heels, then return on my toes.
After this examination, they sent me for blood work to get a better picture of my overall health and to check for other ailments. Sitting and waiting for the blood work, I experienced a moment of encouragement. Several children were also in the lab, waiting to get their blood drawn. As sad as it was to think of what might be ailing those children, for the first time I also felt grateful. I realized that I had been blessed with fifty good years of healthy life.
After the blood work was over, the clinic sent me for EMG needle testing in another part of the clinic. After checking in, we were taken to a small room where I was asked to lie down on an examination table. So I lay on the table, looking up at the ceiling and counting the number of lights up there, trying to think of anything except where I was and why. Several doctors stood around me, and next to them were some computer monitors.
"What we are going to do is put some needles in your muscles, move them around slightly, and then measure what's happening in the muscle," the head of the ALS clinic said to me. "Just try to stay relaxed."
Stay relaxed? How in the world can you relax when people are sticking needles in your muscles? The doctor smiled and stuck in the first needle. The only word that comes to mind to describe this procedure is nasty. I did okay until they put the needle in my thumb muscle and began to move it around. At that point, the word nasty did not seem to do justice to what I was feeling. But I kept looking up at those lights, and after about twenty minutes, the testing was over at last. We were then sent back to the ALS clinic where the doctor would meet with us and go over all the testing.
"ALS is a very difficult disease to diagnose," the doctor said. "There are three categories of diagnosis. One: possible ALS. Two: probable ALS. Three: confirmed diagnosis. Now, your blood work came back as a normal. The needle testing showed that there is some damage in your right hand and arm but not in the other muscle groups. So we need to have your local neurologist do an MRI to see if there are any difficulties in your spine. If that MRI comes back normal, then it is our suspicion that you have probable ALS."
That was it. All of the testing and all of the expertise of the doctors at this special ALS clinic led them to believe that I had "probable ALS."
I wanted them to tell me either I had ALS or I did not.
I did not want to endure any more waiting or uncertainty.
Excerpted from SEEING THROUGH THE FOG by ED DOBSON. Copyright © 2012 Ed Dobson. Excerpted by permission of David C. Cook.
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