Living With CFIDS
My Son's Strength

By Terry Woster

I discovered I had prostate cancer in the winter of 1995. I’d just turned 51 when a biopsy confirmed that I had a tumor growing. Radiation, surgery or wait-and-see were options offered. I chose surgery. I’ll never forget the sense of relief I felt that I could make a decision, take some action and attack the problem.

Within days of my cancer diagnosis, my older son, Scott, learned that he had chronic fatigue and immune dysfunction syndrome (CFIDS). He’d just turned 26 when a week of tests at Mayo Clinic ruled out virtually any other possibility. He learned his condition had no specific, tried-and-tested course of treatment, but when he called his mother and me, he said he felt a great relief at knowing at least a name for the mystery illness that had taken his young life away from him for the last eight months. He’d thought, he told us, that he was slowly going insane.

His mother, Nancy, is a registered nurse, and she shared his relief. She’d been with him through a flu that just seemed to keep coming back, a series of nasty head and chest colds that some days left a strong, athletic young man slumped on his couch, too weary to walk to the kitchen to fix a meal or go outside.

I admit I struggled with the CFIDS diagnosis. I’d heard of chronic fatigue syndrome, the “yuppie flu,” and it didn’t seem like a big deal. If it were really a serious disease, surely it would have an identified cause. Surely there’d be an effective treatment. I had trouble accepting it when both Scott and Nancy, who threw themselves into a review of all the literature available on the topic, told me how uncertain everything is that surrounds CFIDS.

Five years later, with my cancer surgery a success and my semiannual checkups showing no signs of recurrence, I sometimes reflect how much we’ve had to learn about CFIDS and our son. During my five years of recovery, Scott has had a constant struggle with his illness.

He has had good, strong times, and he’s had times when he has become almost paralyzed, partly because of the way CFIDS drains his body, mind and spirit and partly because of the fear that it will return as forcefully and completely as it did back in 1995. Back then, it seemed as if nothing could slow this young man down.

An active mountain biker, a varsity tennis player in high school, an always on-the-go kid, Scott had moved to Austin, Texas after finishing his master’s degree at North Dakota State University. When he had a job offer at a boarding school for Native American children in a small town on the Missouri River in South Dakota, he packed everything in his Volkswagen van and pointed the nose north.

He settled in, made some friends and, on a hot weekend in August, went on a camping trip to Badlands National Park in western South Dakota. He came home with a cough, aching joints and a weak, light-headed feeling. It didn’t go away.

People with CFIDS or with family members who have the illness know what followed. He tried to wait the infection out. Doctors
told him that these things run their course in a couple of weeks or a couple of months. But nothing changed, except that he missed work at a new job where he had little vacation or sick leave accumulated.

Scott had a series of tests, blood tests, CT scans, MRIs, allergy checks, middle-ear exams, the works. No one could find any cause for his distress. He began to think it was in his mind, and that fear added to the already growing depression from always being drained, never being active, never doing the job he’d come North to do. He cried a lot in those days. So did his mother. So did I.

Then I got my diagnosis of cancer. Nancy and I drove the 85 miles to our son’s home on a Sunday afternoon to tell him the news in
person. He was huddled on the sofa, a scene that had become so commonplace in the past several months it almost broke my heart just to see him there.

When we told him I had cancer, I swear his body didn’t move at all. Tears just began to leak from his brown eyes and run down his drawn face. He cried and cried, and we stayed as long as we could that day, as worried about him as about me.

The next morning, still sick and scared, Scott threw some things in his VW van and drove to Rochester, Minn. Without an appointment or a referral from a physician, he simply presented himself at the Mayo Clinic’s front desk. It took a week of doing that every morning and sitting in a waiting room the rest of the day, but finally he got to see a doctor. She scheduled a full week of tests, including a session with a psychiatrist who basically said, “Of course you’re depressed. You can’t do anything at all and nobody has a clue why not.’’

The CFIDS diagnosis resulted, and the rest has been Scott learning to live with it.  Nancy and I have had to learn, too. I had thought, literature on the subject to the contrary, that when he began to improve, that was the end. He was better. It has been hard to deal with the setbacks the disease sometimes brings, hard to read of new treatments or herbs or drugs or whatever and have him try them only to find that they don’t work for him.

CFIDS is a tough customer. When the bad times come, Scott needs a lot of unquestioning and unconditional support. He needs
to be reminded that he’s had many good days, many active weeks, some long stretches of pretty normal living. He turns to his mother a lot then. She is still the strongest ally he has when he needs someone who will do nothing but listen to his fears and care about his health.

I, on the other hand, always try to fix things, suggesting it isn’t as bad as it seems. One of the reasons, I know, is that I too am afraid. I share his fear. What if this is the time he slips back and doesn’t get better again? What if we go back to that period about eight months into CFIDS when he was talking seriously about giving up his work and just living back at home? If he can’t stand up long enough to teach a class, can’t concentrate long enough for a counseling session with one of his junior-high students, how can he function? So I worry on the inside and reassure him heartily on the outside.

His mother just listens and comforts. She asks the right questions, reads all the information, every new study or treatment or journal article. He has a couple of friends who have become nearly as good at supporting him as his mother. He also has some friends who don’t understand at all, and who tell him to stay active, fight it off, things like that. But more and more, he has some people who accept his condition.

He recently went biking in the Rocky Mountains for a week. Great, some of our acquaintances say, he must be doing really well. Why bother to tell them that for two days he slumped in the pickup as the others rode, for another day he rode a bit and had to quit. As he said, “There were two really good days.’’

Scott has learned to judge the good, not the bad. He keeps a journal and can tell you what kind of day he had for any date in the last five years. He started his journal to look for patterns, clues to a cure. He continues to remind himself, and us, that he does have those good days.

When he has those good days, when he’s shooting hoops or playing dance jobs with a three-piece band, everybody notices how well things are going. When he has the bad days, only a few of us see him fight it and know that he wonders if it will go away again this time.

I’ve been called strong for going through cancer surgery. People who think that should get to know my son.

Terry Woster is a newspaper reporter in Pierre, S.D. His son Scott has been battling CFIDS since 1995.