Do Not Go Gentle (16 page)

* * * *

Monday morning found the weather much improved, with sunshine and an increase in temperature from the cold weekend weather. It found Jamie in no better mood than on Saturday. However, where his mood before was angry, Jamie was now sad and reflective, an unusual condition for him. It was now just over six weeks since the day he had first felt ill. Since late August, he had seen more doctors and had more tests done than in his entire life beforehand.
How can I still be feckin' ill?

Jamie and Eileen were with Doctor Jasinski for the latest results from the latest battery of tests. Jerry seemed apologetic. He was almost as frustrated by Jamie's situation as they were. The big difference was that Jerry's livelihood wasn't being affected.

Jasinski looked at Jamie and sighed. “My friend, we may have to finally call this something that I know you're not going to want to hear.”

Jamie chuckled, but there was no humor in his voice. “At this point, Jerry, I'd just like to know what the hell is wrong with me, no matter what it is.”

Jasinski looked at Jamie and Eileen and replied, “Well, maybe not. Right now, the only thing I know to diagnose it as is something we call Post-viral fatigue syndrome.”

“Post-viral fatigue syndrome? What the hell does that mean?” Jamie tried, without much success, to keep the irritation from his voice.

“Well, there's a system called the International Statistical Classification of Diseases, commonly called ICD, which is used for the classification of diseases and conditions. The ICD provides physicians and insurance companies with a common language, if you will, so we all know what we're talking about, at least in theory.” Jasinski laughed. “In the real world, it's not that simple. Post-viral fatigue syndrome presents with disabling fatigue, musculoskeletal pain, neurocognitive difficulties, and changes in mood. Patients may also have nausea, dizziness, loss of appetite and unrefreshing sleep among other symptoms. Frankly, it's something we just don't know a whole heck of a lot about. The Center for Disease Control, the CDC, has started replacing the term ‘post-viral fatigue syndrome' with something you may have heard of—Chronic Fatigue Syndrome or CFS. However, the CDC guidelines stipulate that the patient must suffer these symptoms for at least six months before CFS can be given as a diagnosis. Since we're not there yet, we call it Post-viral fatigue syndrome until you get better or it has gone on for more than six months.”

“Six months,” Jamie exclaimed. Eileen laid her hand on his, trying to calm him. “Jaysus Christ on a crippled crutch, Jerry. You mean to tell me that there's nothing we can do about this?”

“I'm afraid so, my friend. We've run all the tests that we can think of, both here and at Johns Hopkins, that might allow us to diagnose something else. Now,” he said, holding up a finger to catch Jamie's attention. “That doesn't mean we're giving up. Not by a long shot, but in order to satisfy the insurance companies, we have to start putting a label on your condition, and this is the best we have.”

“So, this is basically a ‘catch-all'? A ‘miscellaneous diseases' category?” asked Eileen.

Jerry smiled. “That's one way to put it, and it actually fits with the CDC guidelines. Those guidelines state that CFS is only diagnosed in cases where all other known medical conditions have been ruled out. Although, as most doctors will tell you, it's impossible to rule out
all
other medical conditions. There's too many, and often it's just that the actual disease is slow in presenting all of its symptoms. The problem is that your symptoms—fatigue, headache, dizziness, and cognitive impairment—are also symptoms of many other diseases, but most of those diseases can be identified by a specific test or tests. Once those have all been ruled out, you're left with Chronic Fatigue Syndrome.”

Jamie and Eileen were silent for several seconds, and Jerry let them try to absorb everything. Finally, Jamie said, “So how can you say we're not done yet? If you've run all the tests for known diseases, what the hell's left?”

“Well,” replied Jerry, “for one, we'll keep monitoring your condition. As I said, sometimes these things emerge slowly. In a month or so, we might find another piece of the puzzle and come up with a better answer. Also, we can try some non-diagnostic approaches. For example, I'd like you to consider some physical therapy.”

“Physical therapy? Why?” Jamie was puzzled.

“Basically, it's just another attempt to find a piece of the puzzle. If we put you into physical therapy and after a month or two, you start seeing improvement, that's great. It helps you and it helps me try to figure out exactly what's going on.”

“What if I don't feel any better?”

“Then we stop and try something else, but at least we aren't sitting around doing nothing.”

Jamie looked at Eileen, who shrugged her shoulders. Then he turned back to his doctor. “Alright, Jerry, set me up. I'm willing to try anything that sounds even remotely reasonable.”

“Excellent.” Jasinski made some notes in Jamie's file. “I'd also like you to start taking some mega-vitamins. Just like the physical therapy, it can't hurt to give it a try.” When he finished, Jasinski looked back to Jamie and patted him on the shoulder. “Jamie, we're going to find something. I promise you we'll keep trying. Anything else today, sir?”

“No. Like I said, no offense, but I'm getting sick of seeing you.”

Everyone stood and Jasinski laughed. “No offense taken—I'd rather not see you like this as well. Eileen, you've got your hands full taking care of this guy. Make sure
you
stay healthy.”

“I'll do my best, Jerry. Thanks.”

They walked in silence back to the car. As Eileen began driving home, Jamie said, “Well, now what?”

Eileen took his hand. “Now we take it one day at a time, my love. You've got me and the girls, your family, friends—we'll get through this.”

“I hope to God you're right,” said Jamie. They rode back home in silence.

* * * *

Mid-afternoon, Jamie walked to Saint Brendan's. The day was warm and he needed to get out of the house. He was feeling melancholy. Eileen was at work and the girls still at school. He thought he might try talking to Father O'Connor about his sickness and how he was feeling about it. The church was about three blocks away, and he hoped the walk might do him good.

Hell, though,
Jamie thought as he walked from his house down to Gallivan Boulevard,
nothing I've done seems to help much.
Jamie's thoughts hung about him like a black cloud, despite the sunny day.
We're going to start having money problems soon if I don't get over this. I've burned up all my sick time and vacation time, now I'm on an unpaid leave of absence. Between Eileen's business and our “rainy day fund,” we're not going to be hurting for another month or so, but then what? How do we keep going without my salary, especially with tuition for all three girls? Plus, we have to find health insurance. Can't be without that….

Jamie walked into the outer office. Jan was at her usual spot. “Hey, Jan. How's it going?”

“I'm doing well, Jamie, thanks for asking. How are you feeling on this lovely autumn day?” Jan didn't fake her cheerfulness. From what Jamie could tell, she was genuinely an upbeat, positive person, despite having lost her husband a few years back.

Jamie waggled an open hand side to side, palm down. “Unfortunately, I'm not a damn bit better, and the doctors can't find out what's wrong.”

“I'm sorry to hear that, Jamie”

“Yeah, well, into each life some rain must fall, they say. I guess this is my thunderstorm.” He smiled weakly. “I was wondering if I could talk to himself?”

Jan pointed back over her shoulder to O'Connor's closed door. “He's in a meeting right now, but he should be out shortly, if you can wait.”

Jamie laughed mirthlessly. “No problem. Let him know I'm in here talking to the Big Fella about my problems,” he said, pointing to a door that led into the church.

Jan nodded. “I'll tell him.”

Jamie walked into the church, strolled down the Romanesque nave, and sat in a pew a few rows back from the apse, with its soaring arch above both the original altar and the modern one used by the priests to say mass. Light streamed in through the various windows, clear and stained glass, but the interior was dim nonetheless. Jamie got down onto his knees and crossed himself. After praying silently for a few moments with his head bowed, Jamie looked up at the altar and began talking softly to himself, praying aloud.

“So, what, exactly, am I supposed to do now, Lord?” Jamie whispered. “Have I been such a bad person that I deserve this? I know, I know. You move in mysterious ways, but as Mother Theresa said, ‘I know God will not give me anything I cannot handle.' I just wish He didn't trust me so much.” Jamie paused, shaking his head, “but even if You see fit to test me in some way, why test my wife, my daughters, my family? How is losing everything because I can't work supposed to teach us anything?” He paused again, rolling these thoughts around in his head. “God, please don't let it come to that. I will do anything to avoid it coming to that. Let me know what it will take to get over this, Lord. I can't believe you want us to suffer needlessly, but I've got to tell you, Sir, I'm not seeing the point to this lesson.” After a few more seconds of silence, Jamie continued. “Is this a test of my faith? Have I not been a faithful servant, Lord? I've been the best man I know how. While I might not be as devout as others, I've always tried to obey your laws. How is this illness fair? How is it a just reward for living a good life? Damn you, how am I supposed to pull myself through this if you keep knocking me on my ass?” Anger limned his last words, and Jamie's voice rose slightly.

“We cannot know the answer to that, Jamie,” came a deep, mellow voice from behind Jamie.

Jamie jerked around and up from his kneeling position to a crouch. “Jaysus.” he said to Father O'Connor. “I hate those rubber soled shoes of yours, Father.” Jamie sank back to sit down in the pew and slid over so the priest could join him.

“Sorry, Jamie,” O'Connor apologized. “I forget sometimes how silently a big man like me can move.” O'Connor knelt and crossed himself, then rose to his feet and settled his bulk beside Jamie. The big, beefy priest dwarfed him, being several inches taller and close to 300 pounds. “Jan said you wanted to see me.” O'Connor turned his body so he was facing Jamie in the pew.

“Aye. So how much of my rambling did you hear?”

“Not too much. Enough to know that you're still sick and you're starting to question why.” O'Connor paused and pushed his glasses back closer to his large brown eyes. “But it doesn't work that way, Jamie, and you know that. I know you were taught that.”

“Yeah,” Jamie chuckled, “but padre—what am I supposed to do? I've been praying, I've been begging, bargaining with God, asking Him to at least let the doctors find some answers.”

“You aren't the first person to bargain with God,” replied O'Connor, “but even God's Son couldn't convince His Father to save him from his fate. Why do you think you'll get any better treatment?”

Jamie sighed. “I don't know, Father. It's not so much me that I'm worried about—it's Eileen and the girls. Even if I deserve to go through this, they don't.”

“Ah, Jamie, no one ‘deserves' to go through the trials we face in life. It's just part of the human condition. The mark of a true Catholic is how he handles these trials. Job's questioning of God did not lead to the end of his suffering. Only God's mercy can do that. The best any person can do is to pray, keep your faith, and understand that God does have a plan for you. It's just not always what
you
had planned.”

Jamie shook his head and was silent for several seconds. “I know, Father, but it's damned hard. At first, I hated how this made me feel and how I was letting everyone down. Now, I'm just trying to find a way through it in one piece.”

“What you're feeling is perfectly natural, Jamie. It's called the five stages of grief, and you're going through them just like anyone: you started out denying that you were seriously ill, then you became angry. Now you're trying to bargain your way out of it. Unfortunately, the next stage, depression, is what often proves too much for people. They despair and lose their faith. Once you can accept your situation and learn to live with it, you pass into the last stage, acceptance. It's not fair, Jamie. It's not easy, and maybe it's not right, but it's the way it is, and all you can do is ask God for the strength and grace to endure. We never know God's will. We can only pray to find a way to do His will.”

Jamie put his head into his hands and rubbed his face, sighing deeply. “Maybe, Father. I just don't know how to be sick, and now the damned doctor is calling this some kind of fatigue syndrome, like I'm just tired and if I could ‘man up' as my brother so lovingly pointed out, maybe I could work my way through this.”

Anthony O'Connor put a large hand on each of Jamie's shoulders and turned Jamie to face him. “It's not that way, Jamie, and anyone who thinks otherwise is ignorant of the truth of your situation. I know several parishioners who suffer from this Chronic Fatigue Syndrome. It is unbelievably debilitating. Remember the old saying, that you can't know what a man's life is like unless you walk a mile in his shoes? Maybe you're being forced to walk this path to teach you about the suffering that comes with chronic sickness. All I know is that you have many people who love and support you. It's up to you to find a way to fight through this.”